Living with UC and Crohns....and Other Stuff

on the mend

2009-06-27T21:29:00.002-05:00

Hello all

it's been a while but have been too sick to even think about this. last week went to see my gastro, he sent me to yet another one that was suppose to put me in hospital but unfortunately the 2nd doc was on his way to vacation and couldn't be bothered at the time.

however, he did prescribe 2 new meds that may have helped. Flagyl and Levaquin. Am feeling better but am having the tendon pains that go along with one of these and it seems like one is working as a water pill. but i will take it since i have had no pain and i have eaten thinigs that I know will cause pain just to test.

am still at 60 mg of pred but i think i am going to look into alternative meds soon. at this moment i am on 13 different medications and i take 12 pills of just one of those meds. (asacol)

well, that's my news. looking for a local gastro so i don't have to fly to atlanta to see mine but i want the local to work with my doc in atlanta, i trust him.

hope anyone who reads this is doing well and please stay hydrated. it's horrid down here in florida

thanks for reading

emergency room visit

2009-05-22T11:18:00.002-05:00

Yesterday I went to the ER in my town. I just got tired of the overwhelming pain, and when the blood. I spoke with my doc who lives in Atlanta and was concerned so off we went to the hospital.

They ran a cat scan to make sure it was "just" the UC because after this many years things can become worse. Other issues can rear their ugly heads. But it was the UC.

So after a few hits of demerol and then a script for pain meds and nausea they sent me home.

Everyone was so nice there. They didn't even get my insurance info until they had me in the back and hooked up to the meds. New policy seems to be patient care first. I liked that.

Still in some pain today of course. But not like yesterday. It showed me that I really do need to appreciate the better days.

We all should. So have a safe and wonderful holiday. I hope to do so as well.
thanks for reading.

stressful week

2009-05-20T22:52:00.002-05:00

It's been a very stressful week and my body is in agreement with me. Have been in a lot of pain for the past several days, lots of blood. Am very tired. Anemic.

Having a pain pill and if that does not work then I will be going to the emergency room. After taking 4 lomotils (the no-go pills), they didn't really work, I have visited most of the bathrooms between my house and my moms (100 miles away). The pills as I stated didn't work, and I have been in a lot of pain for days. Am not really registering life right now.

that's my day. hope yours was better.

ear aches, tummy aches

2009-05-17T13:41:00.002-05:00

Good afternoon.

It's a wet one here in the panhandle of Florida. Didn't water the lawn this morning so I guess it's a good thing.

Have been experiencing ear aches. which is not making me happy. And my hearing is still diminished due to the ear tubes, again not happy.

AND, even with 40 mg of prednisone, am having a horrid time with the tummy. Up and down all night, the bleeding, the pain, the urgency. I am back on all meds and I know it will take a bit of time to get back on schedule but I am tired of screaming into a washcloth in the middle of the night. No rest, no sleep, scared of food.

well, that's been my few days, hope yours are better.

back on the roids

2009-05-12T23:00:00.002-05:00

Hey all.

Haven't been in the frame of mind to write. I ran out of most of my meds and since I get them via mail and get 3 months at a time, it's a bit expensive so I had to wait until I could afford them. I was out of pretty much everything but prednisone, including the blood pressure meds.

And now, my flare is worse. Up to 40 mg of prednisone again. It feels as if a fork is being used to tenderize my colon. Not being able to sleep, having to take no-go's (lomotil) in order to leave the house at all.

The stress of my little ear thing, the pain from that, the everyday stress, has all come crashing down on me.

However, I am able to "breath" for a moment. Dale is gone to Birmingham to see a couple of doctors. We feel he was exposed to some sort of mold last year and has not been able to do either his art nor really start looking for a job. Hopefully these docs will be able to help him. We are going to start a website in regards to what he went through for that. When that is up and running I will post it here. Unfortunately, a lot of docs don't believe that, but I have seen it first hand with him. We went to at least 7 doctors and no one would believe him! Very frustrating. It reminded me of when I first started having the problems with my colon. It took me a couple of years to find anyone to even do a test on me. They said bleeding was common. Well, maybe some blood is but not what I was having then. And not what I am having now.

I am so tired from the blood loss, but can't sleep due to steriods.

Am rambling so will end now.

Thanks for reading.

Tubes in ears today!!!!

2009-05-06T19:14:00.002-05:00

Hey all.

Am a bit dingy, well more than usual thank you very much. Today I had out patient procedure to have tubes put into my ears as I have so many double ear aches. Not fun. But today, hopefully, I started on the path to end this.

The procedure didn't take too long. it was almost cancelled. My doc changed offices and that somehow changed her tax id which changed her status with Medicare and United Health Care. Her office called yesterday, the day before the procedure, to let me know that this and that it might be considered out of network which I can't afford. They called back later to state that anything the insurance and medicare doesn't cover, they will write off. So, they are so concerned about their patients.

And since I couldn't have anything to eat or drink after midnight, I was not able to take meds. they had to give me a steroid to make sure I didn't have any problems with the drugs or procedure. I had never thought of that.

After looking at a diagram I definitely understand my ear problems. The canal should go straight in and mine goes basically in a bit and then straight up.

Hopefully this will help my chronic ear aches, vertigo, and problems with flying.

Well, this is all. I have wonderful company for the rest of the week. My nephew and his gal. I love them both dearly so i won't be back much for the rest of the week.

On a different note, I discovered that the young man who had shot and killed the local deputies was the son of a neighbor of mine. They are heartbroken and have no idea how this happened. I am so sorry for them. Keep them in your prayers as they are so confused.

Thanks for reading and have a good night.

Life is so fragile

2009-05-01T17:29:00.002-05:00

Good afternoon.

Today I saw something that touched my heart. There was a funeral procession for a deputy that had been killed in the line of duty last Saturday. Quick background - domestic dispute, 2 deputies sent to arrest the husband. Found him at a shooting range. They tried to arrest, they tasered and he shot them both in the head. Killed both of them.

One funeral was yesterday. The other today. The only reason I know is that I had left my home to run a few errands and met the procession on the way. Now I don't know if other areas of the country do this but here in the South, when we meet a funeral procession we stop. Pull over to the side of road and be respectful.

I got out of my car and watched as the over 2000 cars drove by. We are in the Florida Panhandle and there were law enforcement vehicles from all over the south, not just our state. Also Coast Guard, Life Guard, etc.

These men left families. I am sure they understood that their jobs were dangerous. But we live in a small town where this sort of thing doesn't happen often.

The shooter was pursued to another county and when he got out of his truck he got out shooting so they of course shot back and killed him. The reports in the papers were the domestic dispute started over a tube of acne cream. His wife already had him arrested for domestic violence but where was she? Back with him. So now his "domestic abuse" has ruined 2 other families.

How sad she couldn't get out before something like this happened. I was in an abusive marriage many years ago. I was very young and very stupid. Luckily we had no children so when I decided to end it and knew that it could very well end my life to do so, I had only myself to worry about.

There are so many options out there for those in a violent relationship. Please get out of it. Seek those options. Don't let others (like the deputies) literally have to die before you do. Staying in an abusive relationship is not their choice for you.

Pray for the families of the deputies and for the family of the shooter.

am not feeling well

2009-04-30T22:04:00.002-05:00

hey all.

it's been an emotional day. my stomach is in a lot of pain, i had to get Dale together so he could go out of town for a few days, had to run errands, blah blah blah. have been missing medications. blood pressure is up to 139/103. just tired, cranky and again emotional.

with dale being an artist, money is pretty tight and i guess it's just getting to me. so i haven't done the research i want to do for some things but will get to it.

sorry but i am going to bed.
good night

Having ear tubes put in...

2009-04-28T16:25:00.002-05:00

Hey all.

Today I made the arrangements for having the out patient surgery to have tubes put into my ears next week. I just feel so stupid, having this done out patient when most small kids can have it done in the docs office.

I have never had surgery, only the colonoscopies so I am a bit unsure of what to expect. It's a week away, of course I have to have someone there to drive me home. Am hoping that the fiance will do so. Must admit there will be problems on that front if he makes the choice not to take care of him during this.

The steroids I am on are definitely having an impact on my personality again so I better sign off for now. Might get into one of my mini rages....
Have a good evening and thanks for reading.

Back to the all white diet

2009-04-27T20:17:00.002-05:00

Hey all.

Have decided to use the low fiber diet for a while. The pain in my tummy is so bad and I know that normal pain pills won't work if I could even get them. So, back to all white stuff. Have yet to change my appointment with the gastro doc. Now I have decided to wait until June as I am afraid to be in the Atlanta airport with the Swine Flu. With an immune system that seems to stay beaten down I am nervous.

Still having some mental confusion from the head cold but am feeling a whole lot better.

Nothing else exciting. Just tired. Have a good night and thanks for reading.

Another day in paradise

2009-04-26T22:32:00.002-05:00

It was a beautiful day here in the Florida Panhandle. The family, Dale - I and pups, went for a brief visit to Navarre Beach. We did not actually see the beach part, we went to the soundside. It's not posted that no pups so we go and let them walk around.

Now I found out that someone who went surfing in Navarre Beach yesterday went missing. It's like no one that is not from here understands, red flags mean stay out of the water people. In Pensacola Beach yesterday there were 25 folks that had to be rescued, there are 18 lifeguards. A busy day on the beach!

We don't go for very long and on the sound side there are some very nice restrooms. So, I am comfortable going there.

But, another day taking Belladonna pills for the tummy. Tomorrow I am making the appointment in Atlanta to see my gastro guy. Need new meds since I won't take Lialda. So, it's back to Asacol and Pred for me.

Sorry, just rambling. Still have a bit of brain confusion due to the headcold.

Have a good night and thanks for rreading.

Lialda

2009-04-25T12:14:00.002-05:00

Hey all.

It's a beautiful day here in the Florida Panhandle and I am appreciating it more since my cold is better.

I had mentioned in a prior post that I had changed from Asacol to Lialda. Well, I have now stopped taking it. One of the main side effects was gas and let me tell you, I believe it. I took the medication for a few weeks and thought maybe my system just needed to get used to it but it never did.

Am so glad I used the discount coupon and card and it didn't cost that much as I have a full months supply of it and will not take it at all. It was so painful and nothing not even taking tons of Gas X helped.

So, that's my 2 cents for right now. Just thought I would let you know my experience with it.

Have a great day and thanks for reading.

Have been sick.....

2009-04-24T13:13:00.002-05:00

Good afternoon all.

I have had my first spring cold of the season. It was not too much fun at all. The confusion in my head during this was so obvious. I washed a load of laundry on Monday and it is still in the washing machine. Couldn't even remember if I had taken cold medicine or not. Needless to say, I have not taken my regular meds since Monday. However, I have been taking an old wives tale remedy - a tablespoon of apple cider vinegar every day. Just started that on Wednesday so I don't know if it helped or not, but I do know of a older friend of mine who takes it every day and cannot remember the last time she was sick with anything at all.

She makes her granddaughter take it and she is never sick either! So, I am going to try and take it daily if I remember.

Living on a diet of soup and crackers or just crackers did not give me any fiber but for some reason my stomach is hurting. So, now the heating pad is being used.

I must say it is good to be able to think a bit more clearly and to be able to breath through my nose.

So, that's all I have to offer today. Nothing much but I hope to actually have some news next week in regards to treatments for my lovely disease.

Have a good afternoon all and thanks for reading.

Again am thinking how lucky I am

2009-04-18T17:37:00.003-05:00

Today I found out that my neighbor Windy passed away. And in a conversation with my cousin who has crohns, Josie, I discovered that a friend of hers was diagnosed with colon cancer 2 weeks ago and she passed away this past week.

So much is talked about in regards to other cancers and diseases but when it comes to problems with the colon, people are embarrassed. Well, I say, suck it up.

I have no problem telling people my story as you can see from this blog. I talk to people in line at the grocery store, on the planes to see my doc in Atlanta, basically anywhere someone is trapped with me.

Sure they probably don't want to hear about, but again, spreading the word might save a life.

For me today was tolerable. Still in pain, still using the heating pad, but I wanted to do something outside in the beautiful Florida sunshine so Dale let me mow part of the front yard. I love yard work but am not always have the ability to do so. Yes, there were my bathroom sprints, but the sun on my face was worth it.

I will continue to be reflective of my life and how lucky me and family are. Windy's visitation is on Tuesday. Today I found out that her 5 year son's name is David.

Keep Windy, Bill, David and the daughter in your prayers. Now Windy is not in anymore pain.

Please, spread the word. Get tested. it's really not that bad.

Horrible pain today

2009-04-17T18:42:00.002-05:00

Good evening.

Today and yesterday I have been experiencing horrible pain in my colon. I don't know the correct terminology, you'd think I would after all these years. But it feels once again as if a fork is going up and down in that same spot. And doing the bathroom sprints all night again!

Today, just taking my shower and bathing that area on my stomach hurt. And the only thing I can attribute this to is stress. And I have been having my share of that lately.

Dale didn't make it to his art show in Daytona. Just couldn't do it. Money is very tight here with us living on just the disability income I have. Don't get me wrong, I am very thankful for what I do have.

But one income just isn't enough. So, he is considering his options, school is one of them which I always encourage for anyone. But even a part time job will help us out.

But more importantly I have to learn how to manage my stress. Stress contributes to so many of our illnesses and it seems that us in the USA don't know how to manage it as well as other countries do. I learned that from working with a very diversified group of people during my road warrior consulting days. The Americans worked many more hours than the Europeans did.

So, my thoughts for us today are to slow down, play with the kids or pets, and take time for ourselves. My goal is definitely that. Take time for me so I don't have to waste time like I did today. The entire day in bed with the heating pad and pain pills.

Have a good night and thanks for reading.

Importance of medical testing

2009-04-15T23:10:00.002-05:00

Good evening all.

Am not sure how to start tonight. Last October I was attacked in my driveway. That is not important. The next day I went up and down my street to let everyone know about the attack and keep them informed.

I met a lovely couple who live across the street from me. Now I have lived in this house since Sept of 2005 but it's not like when we were little. We don't communicate with our neighbors. Anyway, I digress. I met Windy. She was a lovely mother of a young boy. I had waved at them every time I saw them out in the yard. As Windy and I were talking that day in October I found out she had recently been diagnosed with Colon Cancer. Just a few months after graduating from college and the mother of a 5 year old. She was upbeat, friendly and just an overall lovely person.

She and I had left that talk in October promising to get together soon for coffee. It didn't happen. It never will.

I noticed for the last few days a lot of cars at their house. I am not nosy, it's across the street! Today someone was getting into her car so I asked about Windy. She's in the last stages. In fact, they don't expect her to last tonight.

So I have spent the afternoon and evening in regret of a friendship that should have been but I got too wrapped up in my life to notice hers. Also have spent the time being thankful. In early 2000 my older brother Mark had a colonoscopy because there is so many problems in our family. He had no symptoms of anything wrong. He had colon cancer. They removed 1/3 of his colon and he is fine. Have been so grateful especially today that he went when he did. Otherwise he might not be with us today.

But Windy's family, her husband, 5 year old son and 14 year old daughter from her first marriage. They aren't as lucky as my family. How to explain this to her son? And when it's done and everyone has settled back into their routine, his mom will be gone as well as his sister. She is going to live with her father. It will just be Bill and the son. I don't even remember the names of the children.

Being southern I took food over and when I walked in, she is in a hospital bed in the front room, with hospice. I feel guilty for many things. Not becoming the friend she might have needed, having the health I do have and being so grateful for my own brothers life.

So, please, have everyone you know understand the importance of medical tests. Even if that person is not having problems or symptoms but it might just run in the family as it did in mine. If Mark, my brother, hadn't gone when he did, I know he would be gone from us.

Windy is only 36 years old. You are never too young. Please, go. It may be your life you save.

taxes

2009-04-14T16:43:00.002-05:00

I finally did my taxes last night. Only having disability income I should not have to pay anything in. But the company I use to work for, a very large international consulting firm, has life insurance on me and I have to pay the taxes for that. It's only 3.00 so it's not much. But if I was late, think about the penalties and fines I would have to pay.

The stress over getting the taxes finished because for some strange reason I itemize has caused the latest flare to be worse. I have been carrying my heating pad around with me today. And now I find out that I have to redo them. In order to do them online I have to know what my AGI was for last year that was on line 37. So I have to go find last years, and then start again.

If I get this frustrated over this, how in the world could I manage a job! If a little thing like this makes my UC worse with pain, bleeding etc, what if I had to be in the real world.

So, I will be thankful for small miracles like having the sense to participate the firms long term disability plan. If not I would probably be living with family. My cousin who has Crohns lives with her mother and soon she and her mom will also have another sister moving in to help make ends meet.

Times are tough for all of us. We should be thankful for what we have and for those of us with a chronic illness, be thankful for the good days. I know I am. And one more thing, if you have a parent living, be thankful for that. I speak with my momma almost every day and I am thankful to hear her say "i love you babe". It makes my day. So thank you momma. I love you too.
thanks for reading.

Visit with the ENT today

2009-04-13T23:40:00.002-05:00

Good evening all.

Just thought I would update on the ear aches I have. Went to the ENT doc today. She is a really nice person. We have scheduled for me to have tubes inserted during outpatient surgery sometime in May. She is going to have to get approval from Medicare and United Healthcare of course.

It will be interesting if they try to avoid paying since this should be a simple office procedure however, my ear canals are very tiny and the doc states it will be so painful I have to be sedated.

All this for tubes.

At least the ear infections are gone as well as the sinus infection. I think the other meds have aggravated my system. Am getting back on the regular meds. My medication revolt is over.

Putting in the mail tomorrow an order so I won't run out. Medication costs are so high that I do order through the mail, however, when you get 3 months of several at a time, it adds up.

Well, it's late, am tired. but at least I can hear well!

Good night and thanks for reading.

quiet Easter Sunday

2009-04-12T22:23:00.002-05:00

Good evening.

Hope everyone had a good Easter holiday. Mine was fairly quiet. I live about 100 miles from my family so I didn't get to go over for the Easter egg hunt. My grandmother loved them when she was with us and the family is continuing on in her name.

Yesterday had a bit of a bad day. A lot of running back and forth literally but as usual I made it through it. Again not all my meds either Saturday or Sunday. So why am I surprised at my situation.

Tomorrow I have the appointment with the ENT regarding my ears so hopefully something can be done there. Am ending this now so I can use my heating pad on both ears.

So good night all and thanks for reading.

Ear aches and fear of flying

2009-04-10T12:23:00.002-05:00

Good morning/afternoon.

Again today with the pain in the ears. The right ear is clogged or something. I can't hear out of it all. On Monday I have an appointment with the ear, nose and throat specialist to possibly schedule the tubes for my ears.

I am afraid because I usually fly to Atlanta to see my specialist - Gastro that is. And sometimes I get so sick on the plane with vertigo that when I get off at the airport I must run to the bathroom. And then I have to get on MARTA which is the "subway" they have. It runs to about one block from my docs office so it's convenient and cheap. But it's not usual that I get off at the first possibly walking distance stop which is actually a long way off from the docs office because I can't stand riding on the subway.

Have started taking the last flight home from Atlanta which gets in between 10 and 11 p.m. so that I have more time between flights. Have gotten off the plane in Pensacola and laid down in my car for a nap so I could drive the 40 miles to my house.

The stress of this has definitely affected my UC. I have noticed that as it gets closer to the MD appointment, my symptoms get worse, more pain, more bleeding, more urgency. To even make it through the day of travel and MD appointment I take Lomotil or Immodium. This is coming up because I have to make the travel arrangements for the flight and my stomach is churning just thinking about that day.

That is my day today. Making the flight arrangements and trying to be calm. Hope your day is going well and thanks for reading.

Disability and Taxes

2009-04-09T19:51:00.003-05:00

Good Evening.

Okay this is so bad. I only have disability income, some from LTD insurance and the other from Social Security and I still haven't done my taxes. The only amount that is taxable is 1/2 of the social security disability. But I itemize and it looks as if I will probably ask for an extension. Dale is heading to an art show next weekend and of course our focus is on getting him ready.

Even though I only pay taxes on half of the social security disability I wonder why even that is required. I have a cousin with crohns who only gets that, no LTD insurance as I do. She worked for an individual and therefore doesn't have the benefits I do. Now, I personally know she doesn't have to pay any taxes when all is said and done, but what if she did? Where would she get it from?

I know I am not alone in wondering when did our government turn it's back on those of us who actually might be in need. When you get that letter from social security every year or so that states how much you would get if you retired at this age or that, blah blah blah. You know what I am talking about. Look and see how much you have paid in over the years and what you would actually get back if You needed help. It's not that much!

When I was 14 I worked for my parents and they paid taxes in on my behalf. I definitely didn't know to do that. Actually I had started working when I was five waiting tables at my parents restaurant, but on the official payroll at 14. So, when I went on disability at 39 I had been paying taxes in for 25 years. I believe I paid in what I could. And now I am getting some of that back. But what about those who didn't pay in what I have, my cousin gets so little that I can't believe she can exist.

I do not want us to become a socialist country but we do need to look out for the "middle class" if that is what we are anymore. At this point, I would love to be "middle class".

Okay, enough of my rant for the evening. Am behind on the antibiotics and other drugs so might be getting off track.

Have a good night and thanks for reading.

A very interesting post re: United Health Care

2009-04-08T13:10:00.002-05:00

Good morning all.

The antibiotics are working, I am thinking as clearly as I usually do which might not be saying much!

But I wanted to share this with anyone who is interested. A blog I follow, Advocacy for Patients with Chronic Illness, posted this very interesting bit this morning. Here is a link to it:
http://advocacyforpatients.blogspot.com/2009/04/mad-as-hell.html

I have United Healthcare and Medicare. Having UC for over 20 years I am now in the higher risk of getting colon cancer. Still not real high but high enough. And I know I have written about this. But what I do know is that Medicare covers colonoscopies every 2 years and I have been told that UHC will follow Medicares lead. I had one last year and will have one this year, so it will be interesting to see if UHC steps up to the plate and covers what they should. If not, I will be fighting it.

We, the little people, have to stop assuming that the treatment we get from the insurance companies is the best we can get. Read everything you can find on what is suppose to be covered, make sure you know your rights.

I am meeting with my ENT specialist next week regarding my chronic ear aches and infections. Might be putting tubes in and she wants to do this outpatient surgery. Am wondering how that will go with Medicare and UHC.

Look for an update when that happens.

Hope all are having a wonderful day. And thanks for reading.

Clinical Trials for UC

2009-04-07T11:21:00.002-05:00

Good morning.

I slept in this morning if you can call it that. Was up and down all night. The right side of my head is so swollen from the sinus infection every time I rolled my head in that direction I would wake up. But enough of that.

Went on the Mayo Clinic website this morning to see what new research was being done. There are 3 clinical trials happening and they are open for enrollment for those of us with UC. One is a medication called Abatacept. It is a drip like Remicade. Is sounded interesting. Unfortunately all of the trials are in Rochester so I can't participate but each of them sounded interesting. This one has an age limit 18 - 101. 101! That would be so great to see someone at that age where having UC is the major health problem they have. That everything else is going well. That gives me hope.

Well, going to use the heating pad on the ears again. Have a great day and thanks for reading.

Ears in Pain, Free Meds at Publix

2009-04-06T19:21:00.004-05:00

Good evening.

Today I went to the walk in clinic to see about getting something for the ear aches and the sinus infection. I was willing to take anything. They didn't give me anything for pain but I did get a decongestant and an antibiotic. For those who are not aware of this, there are some antibiotics that Publix Pharmacy will fill for free. And mine was one of those. So, if you have a Publix Grocery store in your area, call if you need an antibiotic filled and see if yours is included.

I had already left it at a different pharmacy when I remembered this so I went back in and they matched the price. Can't beat free. It saved me almost 6 dollars. Not a whole lot but every little bit counts.

So my note tonight will be short. I have started those meds, my sinus area really aches so I am taking a couple of pain pm medications and going to bed early.

Tomorrow my god-pup peanut is having a bladder stone removed. It's surgery and he is 13 so we are praying nothing goes wrong. Need to be there for emotional support.

So, everyone have a good night and thanks for reading.

Good information for people with Chronic Illnesses

2009-04-06T00:22:00.003-05:00

http://advocacyforpatients.blogspot.com

The above listed blog is a blog about Advocacy for Patients with Chronic Illnesses. It has a lot of really good information on it and I encourage everyone to visit it. If you don't have a chronic illness I am sure you know someone who does so please pass this information on.

The latest blog I read had to do with how insurance companies are going to stop using our health history. Believe it when I see it.

I want to thank a follower of mine, Jennifer for bringing this site to my attention. Many thanks Jen.

So again, I encourage everyone to visit this site.

Thanks for reading.

A New Complaint... Ear Aches

2009-04-05T23:12:00.002-05:00

Good Evening,

Today was an okay day. My stomach has hurt quite a bit and have taken the Belladonna ALK/PB Tabs for it. Have taken more than I should have, with no change. Part of my problem is that I am experiencing my multiple ear aches. It is worse on the right side but both do hurt.

Went to an ENT and she suggested having tubes put in but since my ear canals are very tiny and are "different" because they bend around too much she wants to do this as out patient surgery. So, I wasn't sure if I wanted to be put under to have tubes put in. This is something that happens to small children and babies all the time!

But I have now decided to do it. Am going to call tomorrow and see if she has any openings soon. Right now it feels like a screwdriver or an ice pick is being poked into my ear and it has a flame. And then just for fun, there are piercing sharps pains that are more intense which make me scream!!!!

So, that's the major thing today. The pain in my ears is overshadowing the pain in my stomach. And yet again, another day without my meds. But then I haven't really eaten today and I try to take them with food.

Hope all of you are doing well and I do want to thank you for reading.

Dining Out

2009-04-04T21:41:00.001-05:00

Good evening all.

Am just getting home from dining out! WooHoo. That never happens. One, we don't have the money and two, I don't like taking the Immodium in order to do so. But on Sunday it is Dale's 48th birthday so his mom took us out and I couldn't say no. So, after taking 2 Immodium's out we went.

It was a local seafood restaurant. I don't eat much seafood and as usual didn't partake of any tonight. This restaurant has a wonderful grilled chicken salad but I knew better. Even the little bit of lettuce that was on my hamburger will cause me problems so a whole salad would be so painful. No way.

But it was nice to get out of the house and have to get dressed up in something other than sweatpants, put on a little makeup. It always makes me remember my previous life as a road warrior consultant. I do miss those days. The constant travel, the excitement of a new project. But mostly not having to worry about things like not making it to a bathroom in time, stomach noises, etc.

And I do know that I am a very lucky person to have all I have. So no complaining here, or at least not much.

Earlier today I was cleaning my desk area and found a small piece of paper with the word "astaxathan" written on it. And that it was a anti inflammatory vitamin. Someone had given this to me, not sure who. I decided to find out what it was and did a "yahoo" search as I don't use google anymore and am not sure it is considered a vitamin but did find a website for it. The spelling is different, it's astaxathin and this particular site stated there had been studies that
showed it has superior antioxidant properties to beta-carotene. These were invitro studies.

Not really sure what else there might be to this but thought I would share it.

Guess that is all for tonight. Hope all is well in your worlds. Thanks for reading.

Do I really need my meds?

2009-04-03T20:24:00.002-05:00

Okay, I have already not followed my new goal of taking my meds. Haven't taken the first one today! A plus is the medication cost will go down, a negative is I will get worse. Hmmmm let's think about this one. Which is the best.

To be honest, I am not sure. It is the 3rd day of the month and I am already down to having less than 300.00 for the rest of the month. Have paid the mortgage and basic bills, the power bill hasn't come in yet nor has the water bill.

These are the problems a lot of people have every month. Pay the bills or get the meds. I am lucky in that I still have the medical insurance from my employer so I have a drug card. So the $400.00 med might only cost 30.00. But to me, the 30.00 might as well be 4oo.00. When you don't have the money, you don't have it.

So, I am trying to take the meds on a limited basis. If I am suppose to take 4, I take 2. I don't recommend that at all. Everyone should take their meds as the doc says to, but for me, that is what I have to do for now. Hopefully in time Dale will find a job, but right now things are tough all over.

So, that's my blog for now. Hope everyone is doing well. And thanks for reading.

More stormy weather............. Info re: Humira

2009-04-02T18:55:00.003-05:00

Hey all.

For those readers in the south, hope all of you are doing well. Safe and sound. We've had a lot of storms, tornado watches and warnings, a little flooding....... Glad it is over. And now, tomorrow is going to be a beautiful day, warm and sunny. Tomorrow I plan to do a bit of house cleaning, spring cleaning I guess. Including cleaning the carpets. Hopefully I will feel like moving the furniture around so I can clean under it and get all those pesky dust bunnies.

Today I got an interesting email for those of you who are on Humira, are thinking about it or know someone else who is.

When I took Humira last year, the co-pay program was the shots were free for 6 months, then I paid the first $50 and they paid the rest for the next 6 months. Then after that I would be responsible for the whole co-pay. Now, it seems that might have changed and I urge anyone who is interested into looking into this. It might be free if you qualify and if you are employed with insurance, the co-pay could be just $5.00. Without insurance the monthly 2 shots are over $1500.00 for the month. That is so prohibitive. It is really great that the company will help patients get this medication.

So, go to the humira website and get the info if it will be helpful to you or someone else you know.

I wish it had been worked for me, but I am not surprised it didn't. I am now at 20 mg. of Pred when I take it, and today has proven again I need to take it. The urgency, the bleeding, the repeated trips to the restroom, all reared their ugly heads today. So, in addition to my goal of taking my meds every day, I am going to try and monitor my stress levels.

Guess that is all for now. Please if anyone has something to contribute please let me know.

Good night and thanks for reading.

Yummy pizza......

2009-04-01T22:40:00.002-05:00

Hey all.

Had a pretty good day today, especially compared with yesterday. Did have to use the heating pad several times but that was okay. It was a dark, rainy day for the most part. Tried to check my computers to see if I had that virus worm they thought would take over computers today. One computer did the scan, no virus. But the other keeps hanging up. Not good.

Since I had a decent day I decided to have a home made pizza for dinner. I took Flatout flat bread, it is low fat and low carb, used a pasta sauce that is fairly low carb and used it sparingly. Put ground turkey on top covered with mozz. cheese. Could only eat half of what piece of flatbread so it was filling, yummy and low carb. So essentially I made "healthy" junk food. Yum.

I have eaten all of those things without having any problems in the past, we will see how it goes tonight. Tomorrow is going to be a busy day so I don't have time to be ill.

And today, I took most of my medications. That is my new goal, to take my medications. I have a MD appointment in one month and want to be in better shape than I am right now. I also want to be able to walk on the beach without fear of having a problem. Can't hide that adult diaper in a swimsuit!

Well, that is all for now. Calling it an early night, going to watch a little mindless television.

Good night and thanks for reading.

Finally took my meds....

2009-03-31T23:31:00.003-05:00

Okay, I know that not taking my medications definitely has an effect on me. After all, if I took them like I am suppose to things would get better. So, I finally took them all, first day in a while that I got them all in.

But, on the down side, I had home made soup for dinner. The thing about my soups, I have no idea what I put in them until I take out of the freezer and nuke it.

This one had black beans, corn, lima beans, etc. A bunch of things that will possibly be painful for me later. But it was so good.

I am considering trying the lo-carb SCD diet but it will be a while before I can do it. Have been following the Atkins diet for so long it will be hard to start eating foods that I have avoided for years.

Well, that's all for tonight. It's getting close to midnight and I have to get up early tomorrow.
Good night and thanks for reading.

It's been a stormy day, inside and out

2009-03-31T18:48:00.002-05:00

Good evening.

Here in the Florida Panhandle, it was a stormy day. A great day to stay home, take a nap, sprint to the bathroom. Oh yeah, that's just my day.

For the past couple of days I took my no-go pills, and today I paid heavily for it. Stomach churning, clenching almost. It was not a good day.

So, I don't have a lot to say tonight but have a few things I am looking into that I will want to share.

Have a good night all. And thanks for reading.

Another day, no meds

2009-03-30T22:14:00.002-05:00

Good evening.

Yes, again today I didn't take my medications. Went out of town for the day and was uncomfortable taking the fibercon, and also a little afraid to eat. Since most of the medications need to be taken with food, again no medications until 10 p.m.

And I wonder why I stay sick. From time to time I get really tired of taking all of these pills so I just go on what I call medication rebellion. Right now it's not really so many but at time I was taking over 40 pills a day. And that does get so old.

Have cut back on the supplements, they get expensive after a while and I couldn't tell they were helping at all.

My next appointment with my gastro in Atlanta is in May. Will either do a colonoscopy in July or September. The last one was last September. Medicare only pays for them every 2 years for high risk and my regular insurance seem to follow Medicares lead. I know most will agree with this statement that our health system is much more interested in fixing things after the fact, not in preventative health care. So, let's check me every 2 years. I have read that once you have had UC for 20 plus years, the colon cancer risk increases to over 40%. And since my brother had colon cancer I am very much afraid of also getting it.

But for tonight, have taken the meds I can, will take the rest on later. Tomorrow I should not have to leave home at all. Am looking forward to being at home with the family of Dale and the pups. Who are so cute, Dale gave them a haircut today while I was gone. My two little yorkies have puppy cuts and they are just so much more energetic without all that hair.

Okay, enough of a ramble. I am tired (am also anemic). So I will say good night. And thanks for reading.

It's been a pretty good day.

2009-03-29T23:18:00.002-05:00

Good evening.

Today has been a pretty good day all around. The weather was beautiful, a perfect day. I didn't sleep a lot last night so I slept in. Tummy was not happy last night but did okay today. Well, that's not exactly true. I took some Imodian so i could leave my house. A friend of mine needed some help on his bookwork for his taxes so I went over to help him.

Then came home and mowed the front and back yard. It didn't take as long as usual because I didn't have the bathroom breaks. The Imodian was still working. Of course, tomorrow will probably not be a good one as the normal routine is that the following day is horrid.

But this is the price I pay to leave the house and be confidant. If I had been going to my mom's or something like that I wouldn't have taken it.

I also take Lomotil but I haven't gotten the prescription refilled yet. Must mail that off this week so I can get the 3 month at one time and save money through using my mail order pharmacy. Only problem with that is that some meds even though it's cheaper to do that, it's kind of pricey to pay for three months at one time. I have to pick and choose which medications to get filled. And now I also have to get one of Dales so that has to be added in.

Well that is all for tonight, it is late and tomorrow is another day. Hopefully not too painful.

Good night and thanks for reading.

Calm tummy during a storm

2009-03-28T11:36:00.002-05:00

Good morning, though it is late.

There is a storm raging outside. Roads are floaded, wind is high, puppies are nervous. Fiance still asleep.

But my tummy has calmed down so I feel all is well. Have already had a small breakfast so I can take my medications properly.

Though I have UC, I have a family member who has crohns. She had the surgery and now has the ileostomy bags. She told me that a while back she had a bit of apple juice to drink and then took a nap in her recliner. And when she awoke, there was a hole in her ileostomy bag. She thinks and we have nothing to base this on, that the acid from the apple juice ate through the bag. She cleaned it up and changed, did all that kind of stuff.

So, apple juice is definitely no longer on her list of things to drink.

On occasion I contemplate having the surgery and though with UC, it shouldn't be the level of problems that she has. I might even have an interior bag, I just always decide it's not that bad yet. It may get there, but with God's grace I pray not.

Well, that is all. Going to check on the family in other areas and make sure everyone is safe.

Thanks for reading.

back again to food hates me and i hate food

2009-03-28T00:37:00.002-05:00

Good evening again.

I am remembering why I watch what I eat. My UC is really unhappy with me at this point. Along with eating what I definitely should not have. I didn't take my medications today. Had to leave the house, can't leave the house if I eat. Can only take these medications if I eat. Thus, in order to leave, no food. No food, no medications. Pretty simple.

Haven't been taking the Lialda but a couple of weeks and even that has been haphazardly so can't tell if it's working or not.

I am really wanting to find out more about the yoga as I think if I can start that it would also help with my high blood pressure.

Guess that is all for tonight. Going to take a pain pill that will also help me sleep.

Good night and thanks for reading.

Just had to do it tonight!

2009-03-27T22:34:00.002-05:00

Good evening.

Well, you know how sometimes you have a craving for something you know you should not have? And that most of the time, you do the mature thing and do the "right" thing.

Well, tonight was not of those for me. I have been craving, really craving, Mexican food. For days. But I don't eat it because it doesn't like me. Tonight I gave in. Had the whole enchilada so to speak. Well, one of those a taco and a burrito. Well, I did bring home the leftovers. And I know I will be up most of the night at some point but I had to do it.

With ulcerative colitis I know to watch my diet, eat only agreeable foods. But sometimes, you get tired of the same old food.

So, it will be a long night but it's the weekend, it is suppose to rain tomorrow so I can lay around and not feel too guilty.

On a different note, you might notice that I no longer have ads on the side. Somehow I posed a "significant risk to our Adwords advertisers". I hate that, I think it happened because I added another type of ad to the account. One I found through Google Adwords. Go figure. I hate this because there was good information in the ads. I know this because though I did not click on my own ads, I did go find those advertisers and read about their products or services.

So, sorry I won't be bringing that information to you anymore, but hopefully as I do find things and write about them, they will help someone out there.

Have a good night and thanks for reading.

The weather is horrid....

2009-03-27T17:09:00.002-05:00

Good afternoon.

The power has been going off and on here all day. Tornado warnings and this is going to go for one more day.

My UC pain has lessened, because I haven't eaten anything. But I sooo craving Mexican - actually a taco salad. Boy wouldn't that be lovely.

Today I did get my fiance's credit report. He is thinking of going back to school and doing the art as a side business. He is very good and gets into the shows, but the economy being what it is, no one is buying. Lucky for us I am able to cover him with my medical insurance even though we aren't married. We've been together for 9 years so they consider it to be permanent - long term.

He is really good about my disease and for those of us who have it, we know how old it gets to us. Imagine how it is for those who watch us suffer and are helpless. When it's been really bad, I've had to basically stuff my mouth with a towel when in the restroom to keep from screaming. Didn't want to upset the dogs or worry the neighbors. Dale says he has never seen anything like UC or crohns.

But today, overall has been good. Again, no food but I will eat later. I didn't want to eat and then need to evacuate my home due to a tornado.

I am going to go research a couple of things and if I have the info will post more later.

thanks for reading.

i am in love with my heating pad.............

2009-03-27T00:05:00.002-05:00

Good evening.

I had planned on actually doing some work tonight after ER went off but have been sitting on the couch with the beloved heating pad on my tummy. The left side of my colon always always aches but lately has been really hurting. therefore my chant of tummy tummy hurt hurt has been said waaayyy too much.

So, haven't been able to do anything but read emails and surf the net. Have a few things I am going to research over the next few days and post my findings but there are some things I have just heard about for those of us who suffer from ulcerative colitis that might be helpful.

So, have a wonderful night. No stories to tell. Just tired and in pain.

Good night and thanks for reading

A little bit tired today

2009-03-26T21:14:00.005-05:00

Good evening all.

whew, am a bit tired. thought I would just be running Dale's taxes to the tax place and then I had all these other errands to do. Also, I help his mom with her computer so I was almost home when she called and needed something. So back I went. She wouldn't have asked if she had known I was literally at the road to my house but she is a real estate agent and needed help with emailing a .pdf that had been sent to her. It's a contract and any contract for a house these days is a good thing.

It's been a challenging day. I have enjoyed the several stores I visited with no other intent than to use the facilities. It's always fun having to purchase something when I don't need anything because I feel bad just going in and not doing so. But with UC it can get expensive to have that type of attitude. It's not like I asked for this disease.

Am having some down time, watching ER. Will be working on Dale's website after this and tomorrow I go to help someone else with their computer stuff. But only in the afternoon, I don't do mornings well. It does get old having to sprint to the bathroom. Telling folks on the phone, gotta go and hanging up on them. I have very understanding friends and family.

Have thought about surgery, it's my choice according to my doc. I mean, I can definitely go on the way I am but would my quality of life be better or worse? My cousin who has crohns had surgery but her's was to save her life she was in such bad shape. And I am not sure that she considers that her current situation would be considered quality but it is better than the alternative. She would not have survived without surgery and as I consider us to be Irish Twins of a sort, I am glad she is around.

Well, going to watch a bit of TV now and waste a few brain cells. Might write later, in the middle of the night if I am up.
Thanks for reading.

a break from the storm

2009-03-26T10:21:00.002-05:00

Good morning all.

Have just gotten through the first storm that is coming our way here in the Florida Panhandle. Having lost everything in Hurricane Ivan, I get a bit paranoid during storms and go around unplugging everything and getting together stuff in case I need to evacuate.

One thing I learned from Ivan, take ALL of your medications with you. Insurance wouldn't pay for the refills then, it was too soon so I only refilled one before the Red Cross stepped in and payed for the rest.

Got some rest last night, of course took Tylenol PM and did not eat for a while prior to going to bed. That made for fewer trips to the restroom.

Am still working on getting Dales taxes together and will be able to make the deadline in order to get the "free" tax deal. I was letting the stress of it get to me last night and decided to back down from the stress. I realized I will finish in plenty of time, there was no need for me to stress me. I have never handled stress well and with ulcerative colitis, that's not been a healthy thing.
My friends poor little yorkie also does not seem to handle stress well. His irritable bowel disease seems to be acting up along with his pancreas problems and his kidney problems. He's only an 8 lb yorkie, and very sweet. He has spent this week so far in puppy hospital.

Well, I am rambling so back to taxes.
Thanks for reading.

Oh my back....

2009-03-25T20:31:00.002-05:00

Good evening....

Just taking a break from getting Dale's tax stuff together and making a mental note to organize organize organize throughout the year instead of having to do this!

Still can't believe that someone is doing taxes for free. That is so awesome and we all know the March of Dimes is a good foundation. If you didn't read the prior post, there is a local tax place that will do your taxes for free on Friday if you donate $50.00 to MOD. I went by and made an appointment and they want Dales taxes tomorrow since it is a small business tax due to his art.

So, bending over and go through an entire years worth of paperwork is back breaking and I am not done yet.

However, I checked my email and someone had emailed to me re: a medication I have not tried yet. Those of you with UC may or may not have heard of it but she states that neither Asacol nor Lialda worked for her but with Colazal, 750 mg 3 pills per 3 times a day for a total of 9. So I will be researching that one and talking with my doc next trip in.

So, that's all for now. Just wanted to post the bit about the med for those of us who haven't tried it.

Have a good evening all.
Thanks for reading.

Scared of food

2009-03-25T15:19:00.002-05:00

Good afternoon.

Last night was just okay. Got up several times but not as bad as the prior nights so I am a bit more rested which is always good.

Ran my errands this morning. If I don't eat, tummy doesn't hurt as bad. So, I decided to not eat breakfast and just have a snack when I got home. I didn't realize errands were going to take as long as they did so I got a little dizzy because I am a bit hypoglycemic. (Have I mentioned I also have high blood pressure?)

Things took longer because a local tax place is having a special and I wanted to get in on it. On this Friday they will do my taxes for $50.00. Now, being on disability mine aren't hard, so they will actually be doing Dales for his art business. We paid over $200 last year to have them done so if I had to sit and wait to talk to them, you know I did!

So got home around 2 p.m. without eating and no meds for the day as they need to be taken with food. Ate too much, things I shouldn't so now once again, tummy tummy hurt hurt. AND i have to get the tax stuff together. aagghh. I didn't have any luck years ago on the SCD diet but am thinking of trying it again. Or giving up eating altogether.....

so, that's all for now. I have to bet busy.

Thanks for reading.

Clinical Trials for UC

2009-03-24T23:34:00.003-05:00

Good evening again....

Here I sit, repeating my mantra of tummy tummy hurt hurt..... That seems to be what I say a lot these days.

I decided to go to the Mayo Clinic website and see if they had any new info. Here is a link to the clinical trials for UC -
http://clinicaltrials.mayo.edu/clinicalTrialSubTheme.cfm?subtheme=Ulcerative%20Colitis

One that seems interesting is the one where they are comparing UC patients that smoke and those that don't. I have heard over the years that smoking might make it better, I don't have proof and am certainly not going to start smoking to see if it works. It's been suggested to me that maybe wearing a nicotine patch might help. Looked into that, would try it but nicotine patches aren't covered by insurance and they are expensive.

Also there is a beta study being done with a new drug. Unfortunately I don't live anywhere near Rochester MN and being on disability I can't exactly travel there on a regular basis.

I won't be applying for any of these trials but wanted to post the info.

There weren't any trials listed for Crohns.

On a previous post I had a comment from someone who sent me to a link that wound up being about hemp oil. Not that I would use this as it would be illegal but it will be interesting for me to read up and see what they have to say about it and why would it help us.

Well, I guess that will be all for tonight, unless I can't sleep. So for now, good night.
Thanks for reading.

Why do they discontinue the good things

2009-03-24T19:28:00.003-05:00

Good evening.

Have just finished talking with my niece who was on a hunt for the diapers she likes for her son, White Cloud is the name. They were a good price (less than $6.00), and definitely comparable to the name brands like Pampers. She asked at the store and they are being discontinued. Don't know if it's just that chain that is discontinuing them or if they are not being manufactured anymore.

This happened to me in regards to a medication for my stomach cramps that come with UC. I can't remember the medication name but it worked great and fast. Put under the tongue and within a short time the cramping was gone.

I know that this has happened to everyone out there for one thing or another but it's so aggravating. It's bad enough when it's a diaper but more so if it's a medication that was affordable and worked well. Can't they leave well enough alone? Maybe they should do a survey of the people who actually use the product before they can it.

That's my rant of the evening.
Good night and thanks for reading.

eating hurts, maybe time for low fiber diet

2009-03-24T13:45:00.003-05:00

Good afternoon all.

Okay, it's official. Eating is over-rated. Everything I eat, well let's just say it's a short visit in my system. And my stomach hurts all the time.

This is not unusual for anyone who has this issue. Last year it was so bad I went to the walk in clinic here and they suggested a low fiber diet. Since I tend to follow the Atkins diet I had no idea what in the world that meant. I asked the doctor and he said "things that are white". Well, of course the first things I went out and ate were Rice Krispie treats and ice cream (and not the low carb kind).

After a lot of searching I found a small cookbook on the Internet called The Culinary Couple's Creative Colitis Cookbook. It's 100 low-fiber, non-dairy recipes for IBD, IBS, UC and Crohn's. Everything I cooked from it was pretty good. It was $12.95 which might be considered a bit expensive but being able to have tasty meals and not be in pain was worth it for me.

So, now I have to decide whether to deal with the pain or do a low-fiber diet. My gastro doc wasn't real happy with me going on this diet until I reminded him that I take 16 fibercon a day, or at least try, so I do get my fiber.

I hope you learned something from this posting. And thanks for reading.

Finally, a decent nights sleep

2009-03-24T11:16:00.003-05:00

Good late morning.

Last night I finally got some sleep. of course to do so I took an over the counter sleep aid/pain medication. Okay, I took Tylenol PM. And I also didn't eat anything for dinner so that helped as well.

Even though I got some sleep, I am not up to mowing the grass. Poor lawn, it's in bad shape. Dale would do it but he is getting ready for an art show that is happening in 3 weeks so he doesn't really have the time. His art is really good, check it out at www.paintingreflections.com.

I think for today I will take the generic cramping medication called belladonna. I looked this up once, belladonna is actually a type of poison, hmmmm is my doc trying to get rid of me? I doubt it, he gets too much money from medicare, my insurance and me. Okay, getting too much money from medicare and insurance is kind of funny.

Does anyone who reads this have an opinion of the way our government seems to be heading with health care? I need to follow this more closely and pay attention so maybe I will start doing that. I don't want this to be a political blog, but health care is an important issue to everyone and to those of us with health issues, maybe even more so.

Okay, have a great morning and thanks for reading.

Will ulcerative colitis keep me up tonight?

2009-03-23T21:57:00.003-05:00

Hey all....

I am hoping to go to sleep soon. As it is almost 10 p.m. that would be early for me. I am hoping to actually sleep tonight and not have the repetitive trips to the restroom that I endured last night. The medication Lomotil is something that I do take from time to time to help with this problem but I have found, at least for me, that if I take it too much it kind of bites me in the bum. Right now I am out of it but will be ordering some soon.

So, I will keep my fingers crossed that I will sleep as I am wanting to work in the yard tomorrow. It might be the last day to do so for almost a week. My niece has been busy planting in her flower garden and she lives in military housing. Also my brother has been doing yard work. I just didn't want to have to wear a diaper to do so today.

I tend to be very blunt with my description of my symptoms and the problems associated with it. I feel that at this point in my life with UC, the niceties are over, way over. In order to have any semblance of a normal life I basically deal with the issue and move on. I hope it doesn't offend anyone.

So, good night, let's hope it is.

And the weeds just keep growing...

2009-03-23T18:09:00.002-05:00

Okay, so today I could not have mowed the lawn, but I am planning on doing it tomorrow. There is a chance of rain for tomorrow and then basically every day till next Monday!!!! So, the grass gets taller, the weeds are taking over, and my house looks bad in the neighborhood. Aagghh.. just the neighbor no one wants. All I can say is thank heavens for the house across the street, it's worse.

I did look into the yoga. It seems to be a "breathing" yoga. There is a website www.yogabasics.com that appears to have good information but seeing that I know nothing about yoga I can't say for sure.

Will get the landscaping book out and start making plans for when it stops raining. All I can hope for right now is to mow the grass tomorrow. I love to get out there with the Ipod, pushing the mower and singing to the tunes. Not sure if the neighbors love it though!!!

Won't even plan on the edger and weed eater being used.

So, that's about it for now. Am making dinner for the puppies - they get Science Diet dry dog food mixed with plain white rice. They eat it up and the vet says it's good for them. As for me, don't think I want to eat again today. Not a good day for food, am glad I have already taken the Lialda as it requires being taken with food and I don't want to get sick from taking my medications.

Thanks for reading.

Shopping can be interesting....

2009-03-23T16:47:00.003-05:00

Well, this afternoon I had to go to the grocery store and with UC that can always be a challenge. I love nothing more than sprinting through WalMart to the restroom, multiple times. Lucky for me, it's a small one. Very lucky. And I wore running shoes which gave me great traction!

So, I guess you know I didn't do any lawn work or look into flower gardens or anything at all. In fact, I have already gotten ready for bed. Now, I know I won't be able to go there but I am ready just in case.

My puppies know I don't feel well, one of them is snuggled right up next to me, keeping me company. I had to eat in order to take my meds, with the mixture I take I am nervous about taking them on an empty stomach so I had cheese and bacon. Again, am on the Atkins diet so I can eat that stuff.

So here I sit, waiting for the inevitable with puppies and heating pad. As I can't really do anything else, I will start researching that yoga program a friend of mine suggested. I really want to get back to exercising, in fact I have an elliptical machine and a Body by Jake exercise machine just sitting here, being dusted. Hopefully I can get to it soon.

Well, that's all for now. Going to get the research on the yoga and will post what I find out later.

Have a great afternoon and thanks for reading.

Didn't sleep well....

2009-03-23T10:09:00.002-05:00

good morning.

Well, that was NOT a restful night. I probably should have slept in the bathtub. I have done that, not too comfy.

Today I was thinking of mowing the lawn and looking into planting flowers or herbs. Not quite sure if I am up for that. Will have to see. Haven't had my breakfast, nervous about how it will be after I eat. I usually have an Atkins bar as I try to stay on the Atkins Diet so maybe it won't be too bad.

My poor lawn is in terrible shape. I had mole crickets a couple of years ago and they pretty much ate the lawn. We have St. Augustine grass and you can't buy seeds for it. In regards to flowers, my niece (have previously mentioned her - her hubby is in the Army) planted tulips. Don't know if they would work here.

She so far has not been diagnosed with any type of bowel disease but she sure has our issues.

It's again a beautiful down here and I am hoping to feel better and get out. Will do some research on the yoga that my friend recommended and will post anything I find out.

Will post again later. Have a great day!

a shower can revive!!

2009-03-22T22:16:00.006-05:00

Okay all.

Thought I was done for the night but after having dinner, kisses from the puppies and a hot shower I am so much better.

Am thinking of a conversation I had with my niece today. She worked in her yard and created a flower garden. I am thinking that tomorrow, if my UC permits, I work in mine. I need to mow the grass and then think about where to start. I already have an area that was a garden for the homes prior owners but I have not really felt up to it. So, maybe I can put in some flowers that are for my area of the country. Also I really want to start planting herbs - maybe there are some that might be good for those of us with UC. Not sure but am looking into it.

On a different note, I received an email from a friend of mine who recommended a particular type of yoga - abdomen asanas. I am not at all familiar with any type of yoga but am going to look into this one. He is in remission and anything anyone can suggest to lead into that direction I will definitely research.

Okay, so for tomorrow, it looks like mowing the grass, planning a bit of a garden, looking into herbs . Along with the normal of taking ALL of my medications. I have started on Lialda now and it's hard to tell if it works if I don't take it.

This is really goodnight.

laura

am I tired!!!

2009-03-22T20:08:00.002-05:00

Good evening all,

Sorry I haven't written in several days but I have been visiting with my mom and we had a wonderful time. As always when my schedule changes I forget to take my meds as I should, and being anemic, I tired easily but other than that a truly wonderful time.

Mom adopted two sweet 4 year old Yorkshire Terriers a few months ago and it was also nice to spend time with them. I am a huge animal lover and have 2 yorkies of my own. Hers are micro chipped and she is waiting on the paperwork to get everything done so she can register them with AKC. They are wonderful company for her. I felt really special as she took off from work to spend time with me. She is a "senior adult" (76) and has to work to make ends meet. Being on disability from UC, I don't have the ability to help her right now.

There seem to be a lot of yorkies in my life, a friend of mine has one - Peanut. Peanut is a sweetheart who has so many medical problems, he has irritable bowel disease, problems with his pancreas and kidney disease. We recently went to a university vet school for them to look at him. I go sometimes with her to the vet if it's his irritable bowel disease acting up as we have common medications and symptoms. He is also on prednisone.....

But no matter how much fun it is to visit, it is always good to get home and I am so glad to be here.

I did get to spend some quality time with my niece on the phone. Her husband is in the army so we don't see them very much. She has a 17 month old son and we talk diapers - his and mine. (hah hah). Hey, if I can't make fun of myself, who can....

Well, I just realized I am rambling so it's best for me to end this and write again with a clearer head. I am not looking forward to tomorrow as I know the payment part of missing meds will start kicking in soon.

Hope everyone has a wonderful night and will write again tomorrow.

Thanks for reading.

Laura

Running errands can be interesting...

2009-03-19T14:11:00.002-05:00

Good afternoon all.

This morning I had to run a few errands and that is always interesting for me. First, mornings are not my best time of the day. I never know how far from the bathroom I can get. But this morning I had no choice, I had to be somewhere at a certain time, therefore up and out I went.

Which brings me to how nice folks can be. I must have stopped at a dozen different gas stations and retail stores without purchasing anything because I had to run run run. And I always made it, woo hoo.

It really adds an element of surprise when leaving the home.

But I made it, errands have been run, folks were always nice and now I can sort of relax. Except in a few hours I am on my way to my moms house, 100 miles away. Using the interstate. yes, I do know where each and every rest stop is and which roads have nice facilities at the gas stations, I have my tissue, spare clothes, garbage bags and might be brave and not wear my adult pullups. Not sure on that one.

However, by going out of town I might not be able to blog for a few days but I will try.

I really appreciate the feedback I am getting, it definitely helps to know I am not alone. In fact, my neighbor just dropped by and he has UC as well. We are a definite help to one another.

If I don't get back on, have a wonderful weekend.

Thanks for reading.
Laura

Not such a great day.... but it could be worse!

2009-03-18T21:10:00.002-05:00

Hey y'all.

Well, not able to leave the house today but that was okay. My pups gave me a lot of comfort. I spent some time researching different things on the Internet, one of which is a new medication for me. It's been out but my doc is having me try Lialda instead of Asacol. I am not sure of the differences but again, it is expensive is no drug card. Luckily I have a drug card but Lialda also has a plan where you can get quantity of 60 for free and then there's a card you can get and activate where you only have to pay $25.00 for the prescription for the first 6 months I think. I hope so as it is almost $500.00 for me to have 4 a day.

Tomorrow I will be mailing out the other prescriptions as mail order for me is cheaper and my insurance company provides that.

Being on long term disability, I am still considered an active employee with my company. That gets me medical insurance and a drug card at the same price as if I was working. I also had to get medicare which is now my primary provider. I don't know what I would do if I had to pay full price for meds.

Today my stomach hurt a lot and I had to run run run all day to make it to the restroom. Not the best of days. But could be much worse.

UC and Crohns are not the only things that members of my family have had. One of my brothers had polyps repeatedly for years and now seems to be clean of them since he had half of his colon removed. And the other one decided a few years ago to get checked as there seemed to be a few problems with our colons in this family. He had colon cancer!!! He had about a third of his colon removed and is doing fine. I look at them and wonder how I would do if I had my colon removed but then I think of my cousin Joyce who has had hers removed and doesn't do very well. She has crohns. Along with other issues. But still, I am use to my current way of life and the fear of not know would surgery help or hurt keeps me from doing it. At this point no doctor is recommending it for me.

If anyone has had surgery and is on any meds I haven't mentioned, please let me know. I am always interested in new treatments.

This hasn't been the best of my blogs, the pain is keeping me from thinking too clearly but I did want to chat a minute.

Good night and thanks for reading.
Laura

and the nights can be so long.....

2009-03-18T10:32:00.003-05:00

Good morning,

Am a bit tired today as it was one of the lovely nights when I just should have slept in the bathroom. You know, when you use the restroom, you think you are done. Get back in the bed and get comfortable, and then Nope - run run run...... aagghh..... Gotta love it.

But anyway, today is a new day, it's a beautiful morning here in Florida as I wait to see if I can leave my house to go run a few errands today. I try to avoid taking Lomotil (what I call my no-go pill) as after taking it, when it wears off, I feel worse.

So I have shared some of the embarrassing stories of having this lovely disease. Today I thought I would talk about how I finally got approved for social security disability.

After I graduated from college, I began my career as a consultant with a very large international firm. They had a lot of good benefits, one of which was long term disability. As I previously wrote, my really bad flare began after my father passed away. At that time I was on short term disability and upon returning to work I was able to change my insurance choices and I thought, hmmm, long term disability insurance, not too expensive and would pay me half of my salary. That sounds pretty good. So I signed up for it and it was probably the smartest thing I ever did.

As soon as I started receiving benefits from the insurance company, they started trying to get me approved for social security disability. Which means they got the attorney, they did all the work. I just showed up for doctors appointments that were scheduled, allowed someone to visit me at my home and then the all important meeting with the judge. Of course, this took over 4 years.

It was not simple, even though I didn't have to actually be in charge of it, I felt like I was always on call at their whim.

When I finally had my day in court with the judge, he actually said to my face that he had not approved a case of disability for Ulcerative Colitis or Crohns in 16 years because he felt we could all work. As I sat there, in my adult diaper, listening to him, I was a bit upset. Thinking back to the many times I had accidents, or lived with the heating pad on my stomach for days and took prescription pain medication. But then, he stated that after seeing my medical records, looking at the pictures from the colonoscopies, he could see where my case was severe. And approved me on the spot.

I was very lucky in that my doctor in Atlanta worked with me to get me approved. Dr. DelMazo still feels I won't be able to work as my particular flare up never goes into complete remission. And just the least bit of stress seems to aggravate it.

So, that is my story about getting social security disability. I don't get more money, just the long term disability company doesn't have to pay as much.

If anyone is trying to get social security disability, you really need a lawyer to be your advocate but I don't know how they get paid. Also make sure you doctor is on board. I adore my doctor. In fact, he is in Atlanta and I live 6.5 hours away but I still use him. I drive up or use points that friends and family allow me to use. For me, he has been wonderful. He saved my life.

Well, have a wonderful morning. I will be back to chat a bit more later today.

thanks for reading.
laura

Those embarrasing moments.....

2009-03-17T22:07:00.002-05:00

Good evening everyone...

Just thought I would tell a very personal story so that others might know they are NOT alone out there.

When I lived in Atlanta, I lived in a couple of different apartment complexes. My fiance had a job where he traveled all the time so taking care of the pups was left up to me. Now mornings are not good for my and my UC. I like to say that I have to wait and see how my tummy feels prior to making any plans for the day. But with 2 small yorkies, you know what they wanted to do first thing every morning.

There were several times when I was walking them, that, to be blunt - I didn't make it home. Just couldn't do it. So I learned after the first time to always, no matter what the weather, have a jacket that I could wrap around my waist. And for those really bad flares, go ahead and wear the adult diaper.

The first time or two I must admit, I was humiliated. But no one was around to see me any of the times. I cried and screamed, and just felt generally depressed. But as time went by, I realized that this was just something I could not completely control. I can plan for it, but not control it.

There was also one incident where I was driving home from out of state with my 2 pups, had no idea there would be a problem but there was. Interstates don't always have someplace every time you need it. So that was a bad situation. Therefore I have learned to be prepared for that as well. I carry garbage bags, toilet paper and baby wipes in the car always. And usually have a change of clothing. Even here where I live in this small town I have had to pull over and literally find a nice secluded spot in the woods. Once the police pulled over to check on me and I explained the situation, they were very nice - just advised me to be careful where I stepped, to watch out for snakes.

I just wanted to share my embarrassing moments so if these things have happened to you, you are not alone. I could go on.

Leaving our homes is not impossible, it just takes planning for the worst but hoping for the best.

Hope everyone has a wonderful night and I will be posting tomorrow.

Good Night!
and thanks.
laura

Different treatments I have tried

2009-03-17T13:23:00.002-05:00

Good afternoon.

Yesterday afternoon and last night were not good. I didn't feel very well and therefore went to bed at 4 in the afternoon. I thought I would touch a bit on the different treatments I've tried.

After the Mayo clinic put me on Asacol, Imuran and continued the Prednisone I was able to get into a sort of remission. For me remissions don't last long. Then my gastro in Atlanta suggested I try Remicade. At that time it had not been approved for UC but had been for Crohns. My first round was great. I felt great, the symptoms were gone, life was good. Then it began to wear off and time for round 2, same results but didn't last as long. Then round 3. That was a waste of time for me. Remicade quit working. I hadn't stopped any of the other meds but had decreased the pred. So it was back to the normal regimen.

Depending on who you talk to, some folks think diet will impact the UC and Crohns and others don't. With this in mind I tried the Special Carbohydrate Diet (for more info please go to this website: www.breakingtheviciouscycle.info ). Unfortunately for me, the diet change didn't make a different. I haven't found a food that triggers a flare up but of course I have found foods that make me have more diarrhea (corn and I love it!!! of well).

So it's back to Asacol, Imuran and Prednisone. A side effect of the Prednisone is weight gain which drives me nuts. I don't recommend this for anyone else, but I am able to control the weight gain by following the Atkins diet. Since I get my blood work done at least every 2 months, I always ask for a cholesterol test to check that. There is a little weight I haven't been able to lose but I can live with an extra 10 lbs.

More recently I have tried Humira. Wow is that ever expensive. My gastro had me go to another one who had used these treatments. It was over $5000 for the 4 shots in the office and the 2 I took home. However, Humira has a program where is was free for the first 6 months, and then they helped with the following six months. (www.humira.com) I was really good at doing the shots, but after 7 months we decided that it wasn't helping at all so again, why continue. But I do know of folks this has worked for so definitely speak with your doc about it if you don't mind giving yourself a shot at home. I recommend the pen over the syringe.

So, that is some of the treatments I have tried in the past or are still on. Hopefully some of this info will be helpful.

Thanks for reading.
Laura

Continuing my own experiences

2009-03-16T10:28:00.004-05:00

Good Morning All.

Previously I wrote about being so very ill in 2000 and how I got better with Prednisone. I found a wonderful specialist in Atlanta where I lived at the time who I really credit with saving my life. By the time I started going to him I was on the verge of toxic megacolon -

The MD got me through all of that but after many months, I still wasn't going into remission. And that is why I started going to the Mayo Clinic in Jacksonville. My Atlanta MD saved my life but was unsure of how to save my colon. The docs in Jacksonville did that.

After several days of being in Jacksonville and the tests I had to do, the Mayo Clinic docs prescribed the following medications and over the counter items:
Asacol
Imuran
continue on Prednisone
Fibercon (they stated this by name above other fiber supplements)
a multi vitamin

I was also already on Celexa and Ativan for the depression and anxiety I had.

This regimen is what I feel and again what I feel (and after all this is my blog) saved my colon. I continued seeing the Jacksonville MD's for the next year. It was expensive as it was out of network for my insurance but I feel well worth it. The folks in the billing department worked with me to have a payment plan I could afford while living on my disability income. I had to leave my job on a medical leave and LTD (long term disability) kicked in. I am very lucky to have that. It took me 4 years to pay off my Mayo bill but the billing department never pressured me.

On a prior post I listed info on Prednisone so check back on that one if you need to. I take 100 mg of Imuran and was taking 12 400 mg tablets daily (my doc just changed that med but I will cover that in a future post). If it wasn't for a drug card with my insurance this medication would be too expensive for me to afford. It was over $400 without a drug card and for me $35 with it. However I just noticed on the Asacol website they currently have a discount card if you are taking it.

The other items the Mayo clinic put me on I purchased at the grocery store. Fibercon is about $14.00 a bottle for 120 tablets and the docs at Mayo stated to take between 10-16 per day. This helps to make the diarrhea more firm. It doesn't make me have more bathroom trips but it does help make them better. I have tried cheaper and generic versions of fiber supplements but they have caused me a lot of problems with gas so I just keep going back to this one.

Again, probably too much information for one post but I have so much to say and I always want to give information that pertains to my story.

Hope this is being helpful for someone out there.

Thanks for reading.
laura

More info on Ulcerative Colitis and Crohns

2009-03-15T22:20:00.006-05:00

I thought I would take a break from telling my history of having this disease and give more information on Ulcerative Colitis and Crohns on this post. In future posts I will give info on Irritable Bowel Disease and it differs from Ulcerative Colitis and Crohns.

Even though I have had this disease for most of my adult life, I forget things I use to know, and learn new info all the time. I spend a lot of time researching this disease and the meds I am on or might start taking and will share that info here so you don't have to do the research. However, if you feel like joining an organization, the Crohns and Colitis Foundation of America is a good one. Lots of good info and if you live in a large enough city there are support groups. Not one where I live, but then my support group is my next door neighbor who also has Ulcerative Colitis and also other loved ones.

So, enough again for right now. If you have any questions or just want to talk about your experiences please comment. I am always interested in what others have gone through.

Thanks.

Laura

A Short History of Me

2009-03-15T18:18:00.003-05:00

Now that I have started this blog, I want to share a bit of my Ulcerative Colitis (UC) history. I was diagnosed at 25 but it was manageable with meds for many years. And then, it wasn't. The medical community states that these diseases are not caused by stress and many years ago I encountered doctors who stated that stress would not even aggravate it. Now that perception has changed. In the fall of 2000 my father passed away and one week later I made the first of many trips to the emergency room with the stomach pain that can accompany UC. This was in October of 2000. In April of 2001, I had an appointment with a new gastroenterologist - yes it took me that long to convince myself to go. Once the colonoscopy was done and the results were back I found out how ill I really was. The MD stated that my colon was on the verge of becoming toxic and that things didn't look good.

To make a long story a bit shorter, large doses of prednisone helped calm the disease but made me a bit strange in my behavior. Prednisone, for those who don't know, is a steriod. And just like the steriods that athletes might use, this also had many really horrid side effects. Some of those include: fluid retention, insomnia, euphoria, mania and weight gain.

Doesn't that sound like a lot of fun!!!!

However, the prednisone really helped and that started me on the road to recovery.

That's a bit of history - I have a bit more to say and want to talk about the different treatments I have tried. There have been many medications, some have worked rather well, some not so well and others not at all. However, family members with the same disease or with Crohns and also my next door neighbor who has UC have had luck with meds that haven't worked for me.

But this is all for right now. Will write more later.

Thanks
Laura

Welcome to my new blog!!!

2009-03-15T13:25:00.003-05:00

Hey all.

Am starting this blog to pass on my experiences of living with Ulcerative Colitis (going forward I will just refer to it as UC) and also talk about my family members who have either UC or Crohns and their experiences.

For those of you who do not know what these diseases are, here is a little information:

Ulcerative colitis, an inflammatory bowel disease (IBD) that causes chronic inflammation of the digestive tract, is characterized by abdominal pain and diarrhea. Like Crohn's disease, another common IBD, ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications.

Ulcerative colitis usually affects only the innermost lining of your large intestine (colon) and rectum. It occurs only through continuous stretches of your colon, unlike Crohn's disease, which occurs in patches anywhere in the digestive tract and often spreads deep into the layers of affected tissues.

There's no known cure for ulcerative colitis, but therapies are available that may dramatically reduce the signs and symptoms of ulcerative colitis and even bring about a long-term remission.

*source Mayo Clinic website

And that is what UC is. That is a lot of info for this post, will be back to discuss my experiences soon. Thanks for reading.

Laura