Ulcerative Colitis Tips


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20 Years Living with UC in My Life

Intro:

I am the wife of a 68 year old man who has had UC off and on for the past 20 years. I have never shared my personal life with anyone before, but after reading many of your posts I feel like I need to share my story.

20 Years Living with UC in My Life

My husband is 68 years old and has smoked off and on since he was 14 years old. We were married when he was 21 and I was 19 and have been married for 46 years. After several years of tolerating his smoking, I convinced him to quit. After a few weeks he had colon bleeding which we thought was hemorrhoids.

Following visits to the doctor and several tests, we found out he had UC. Knowing he had recently quit smoking, the doctor said he wasn’t going to tell him to smoke again, but he would probably go into remission if he did. I got very angry that he said that and did a lot of research on it before my husband decided to begin smoking again. After about 2 weeks of smoking the UC was completely gone – or so we thought. I decided I could stand the smoking much better than the misery my husband was in. 10 years later he decided to quit smoking again thinking he was cured and there wouldn’t be a problem, but the UC came back. He has g one into remission then tried to quit smoking several times over the years, only to have the UC come back, each time a little worse. The doctor told him each time he did this it would be harder for his body to go into remission and there was a chance one time he wouldn’t. This last time he quit smoking was over 5 years ago and he is still not in remission, although he started smoking again a couple of weeks after the UC came back.

We have tried changing his diet but that doesn’t help, he has tried all kinds of medications, including Humira shots for 6 months, methotrexate (we found out he is allergic to both), and several other medications for UC, with no help or he has allergic reactions. He is also allergic to aspirin, naproxen and most any medication that is beneficial to UC. He has gone into anaphylactic shock and almost died after taking these medications, so he won’t even try anything else. The only thing he can take that he isn’t allergic to a nd helps him is prednisone and that has done a lot of other damage to him. He has gained about 40 lbs. and is very miserable. He is still smoking, has just recently been diagnosed with COPD, and is still on prednisone, dosage up and down from 10 mg to 40 mg, depending on the severity of his bleeding. Last year we found out he had renal cell carcinoma and they removed one of his kidneys. He is in remission from the cancer so we can be thankful for that. He didn’t smoke for over a week when he had the surgery and his UC became more severe. Every time he tries to cut back on the smoking he bleeds. He knows it is bad for his COPD and his lungs but he said the alternative of not smoking wasn’t something he could deal with. The doctor has said his only solution is the removal of his colon, which he has absolutely refused to have done.

We don’t go many places together because of his UC and when we do the first thing he does is find the bathroom so, if necessary, he knows where it is. I guess what I am trying to say is we are at our wits end. I love my husband and will stay by his side and help him any way I can.

I pray that someday, someone finds a cure or some kind of solution to the problems that everyone with UC or those who live with this disease deals with on a daily basis.

written by Charliee




One Response to 20 Years Living with UC in My Life

  1. Paulette May 18, 2014 at 4:45 pm #

    Ask the doctor if your husband can have uceris 9mg time released tablet once a day.
    I have never had to take the pred yet.
    The Uceris costs a lot, but you can ask the doc for samples to see if it even works.
    We who have UC are very different, and what works for one does not nececcarily work for another.
    I was afraid of Pred so doc suggested Uceris. A lot less side effects and stopped all my bleeding and diarehea. Good luck!

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