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After 12 Years of Colitis, Still Looking For an Answer

Sher’s Colitis Experience:

 

Hello all!

I was diagnosed w/ Ulcerative Colitis about 12 yrs ago at the age of 22. My symptoms started after a month of an antibiotic called “Sumycin”, all though my GI does not think this was the cause of my UC. I find that very hard to believe b/c the sumycin caused so much pain to my tummy, but being young I thought I had to continue the antibiotic no matter what! Wow, do I regret that. I had also had the vaccine for Hep B, not sure if this had any relation either. I started off with Asacol, didn’t know I had a life long disease I thought Asacol had cured me after 2 months, wrong again. My doctors, at that time, never educated me on what I had and I ended up in the hospital. I was on steroids and had to have a blood transfusion…. Haven’t been hospitalized since, thank God! But my struggles weren’t over. The first few years I had periods of remission for several months followed by flare ups and more steroids. I’ve been on Asacol, Entocort, Colozal, prednisone , Imuran, Lialda, Apriso, pain meds… you name it! The crazy thing is when I decided on my own to discontinue the expensive drugs and see what happened on my own not much changed! Not the end all, but at least I wasn’t paying for expensive treatments.

Ulcerative Colitis has effected every aspect of my life. I used to be very social. I barely have any current friends because I don’t like to leave the comfort of my own home very often. I hid my disease from my coworkers, my husband, friends and family. I am divorced, my husband did not understand my disease.. he thought I was “making up” a lot of my symptoms to avoid things (not entire cause of divorce, but didn’t help). I continue to work a full time job, but most the time do not feel well.

My current situation… I have not had any periods of remission for at least 7 years. I have several trips to the bathroom in the AM, I am usually ok for a few hours during the day with the help of lomotil. After lunch I go again, and then in the evening bloating, pain, more trips. It’s usually mucus and/or unformed stool, rarely blood. I wouldn’t even mind the trips to the bathroom if the pain and bloating weren’t there. I get panic attacks in stores. I usually wake up at least twice in the middle of the night. I have back and joint pain. When I take pain killers this usually all goes away, but can’t live on pain meds forever, and do not always have them.

I refuse to take prednisone ever again, so many bad side effects! I usually feel somewhat better when I am off gluten, not as much bloating… Oh yeah and that time of the month is the worst, sorry “guys”. I have been on sulfasalazine for the past week, haven’t notice much change, but it is cheap.

To make matters even better I do not have health insurance! After my divorce I had to find my own policy, and was rejected due to UC… I have to wait 6 months until the ins. I finally found will cover anything UC related, and the insurance I found is through the roof, wish we had universal Health Care sometimes!

I am here b/c I found this site to be uplifting when feeling so bad, and there are others out there like me! My GI does not seem to care, it takes him like a week to even call me back, for a while there I thought he even thinks I’m a hypo… I have a few “?’ for all to answer

Has anyone’s Colitis started after long use of antibiotics … Sumycin or other?

Are there any alcohols that do not disturb UC? (not an alcoholic, barely drink, but Xmas party coming up)

What works best for day to day joint pain?

Has anyone heard bad side effects of being on lomotil for long periods of time? (I take it almost daily to get through work)

Current Colitis Medications:

Currently taking probiotics, sulfasalazine, and lomotil

Will never take prednisone again!




sumycin

4 Responses to After 12 Years of Colitis, Still Looking For an Answer

  1. Jen December 13, 2011 at 7:41 pm #

    Hi Sher!

    I got colitis only 2 years ago (I was 20 at the time), and I basically tried the same old drug routine: Asacol, Remicade, Cortifoam enemas, Prednisone, etc. etc., and even diets and herbal supplements recommended by a naturopath. Nothing really worked for me, although the diet (an SCD variation) seemed to work for a bit as I was weaning down on the Prednisone.

    I had never really gone into remission, and I was losing a LOT of blood (which caused me to become even more anemic than I already was). I had been on Prednisone until about a month and a half ago when I was finally able to wean off of it, which has altered my body and made my face go crazy with acne and inflammation (I’m still dealing with the side effects and will be for a while yet).

    Basically, I had been hospitalised 3 or 4 times, and in August I ended up back in hospital. High doses of IV steroids didn’t work this time for some reason, and my doctors basically told me that I had two options: cyclosporine to try to get me into remission and long term drug use with scary side effects (and most likely colon cancer down the road), or surgery.

    I was adamantly against even hearing about surgery before… that meant that they’d be cutting into me, removing an entire organ, and changing my body… and the bag. I didn’t want to hear it. But when compared to all of those side effects, and the malnourishment, pain, cramps and blood, I started to change my mind.

    I talked to many people who had the surgery (i.e. removing the entire large intestine, and making my small intestine into a pouch and basically taking over the role of the large intestine in a 3-stage surgery), and they all said how it had changed their lives. They no longer had colitis. Symptom free. And no risk of cancer or other problems down the road. I even talked to a lady who had a permanent illeostomy (I currently have a temporary one, waiting for my next surgeries to change it into the pouch on the inside), and she was doing and eating whatever she wanted to; she even told me about her scuba diving trip in Australia!

    Basically what I’m saying is that after all of the surgeries are over, I’ll be symptom free and living a MUCH healthier life. I’m in university, and last year I was afraid to go out and as a result I missed out on a lot. I don’t want to go through life looking for the next bathroom… I want to be FREEEE! (Too dramatic?)

    I know it’s a very life-changing surgery, and it terrified me, but I’ve conquered my fears (plus, they give you REALLY good drugs that knock you out, so you don’t feel a thing! Hehe…) Also, they examined my colon after they removed it and I read the report, and the damage was scary: it was through almost my entire large intestine, almost penetrated through the outside layer of the colon wall, and I had polyps. Cancer (because it runs in my family) was almost a definite.

    I hope this has helped you… I don’t want to scare anyone, just get the information out there that might help someone!

    Thanks for listening!

    Jen

  2. Sher December 13, 2011 at 8:27 pm #

    Jen, thanks… I sometimes wish I would have had surgery 12 yrs ago when I first found out I had this, it would have spared me years of pain and suffering. It seems like everyone here has tried every med available for us with little relief! I still find it strange that many of us were diagnosed in our early 20’s.. I wonder why or what causes it to appear at that age! Well, I’m glad surgery has benefitted so many, it may be my next alternative, after insurance is figured out! In the meantime I’m glad I found this site and I’ll be checking it often to find everyones perspective on this and any advise… It definitely helps to know you are not alone, take care!

  3. Blake December 14, 2011 at 11:20 pm #

    Hey Sher, I just went through surgery, part one of the 3 step J Pouch. If you choose to do so, I believe you will feel so much better. From reading your story, it sounds like you’ve had a pretty miserable time with UC. My experience with UC was much shorter than yours, but very bad. I’ve had 2 flares since last February. I would poop about 12-25 bloody, nasty shits a day, the last flare was 5 months and I took everything to try and control it, no relief. Doctors were urging me to get my colon removed. After I tried Remicade and it did not work, it gave me a bad rash the doctor wanted to get me emergency colon removal surgery. I declined, but ended up getting that surgery only a week later. I had the surgery 7 days ago, I started feeling better day one. I was in a lot of pain, but not going to the bathroom was such a relief. I have a long road ahead, but am already glad I had it. I would’ve probably decided to keep my colon had it not been for the extreme urgency and amount of times I would use the restroom every day. This just made life miserable. Weigh your options. Do you want to continue to live like that? There is no cure for UC except colon removal. Some people can live with it because there UC isn’t that bad, for others, colon removal is a pretty clear choice, although a hard decision. I hope you get your insurance and switch doctors soon. Good luck to you.

    Blake

  4. dr kazic December 16, 2011 at 2:05 pm #

    Dear Sher,
    you are right concerning the relationship of antibiotics and ulcerative colitis. In some patients antibiotics may induce onset of ulcerative colitis-it is considered that such patients have pre-existent ulcerative colitis which becomes symptomatic after intake of antibiotics.

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