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Me and My GI Tract Are Fighting!

Leah N pictureMeet Leah:

Hi, my name is Leah! I’m 34, living in the great city of Chicago. I was diagnosed with Ulcerative Colitis in February of this year.

Some more about her:

I’m a Flight Attendant based out of O’Hare. I love to travel and see new places and unfortunately it has become increasingly more difficult to enjoy with this new diagnosis!

Leah’s Story:

It took some time to finally get an answer to what I was experiencing. I initially just went to my primary physician and she requested a stool sample in which they initially found mold, this seemed to throw everyone off track and I went through months of different doctors, specialists and a lot of pain. I had done some research and based off of my symptoms, I had come across information on UC but no one seemed to want to listen to me. The pain was progressively getting worse, I was starting to have to call off my trips for work because I couldn’t function throughout the day, I was spending far too much time hunched over on the toilet in tears and in such pain it would make me throw up. So, I finally checked myself into the ER and begged for a CT scan, in which they were very reluctant to give me. The scan showed fairly severe inflammation in my large intestine. Shocking! My primary physician had them admit me into the hospital and so bega n a 4 day stretch. In that time, a gastro came to see me and ordered a colonoscopy and endoscopy for the next day. I had my procedures done and by the time I woke up, I had every nurse and orderly tell me I had Ulcerative Colitis. A term that was both foreign, yet familiar thanks to my research and WebMD. Super, now that we know what it is…now what?

Well, I feel like I’m still trying to figure that out. I was released from the hospital a day later with prescriptions to 3g of sulfasalazine and 40mg of prednisone. I was told the steroid would make me feel so much better and I have to say that almost immediately after being released, I felt somewhat normal! I was even having solid bowel movements with no pain which truly felt like a victory!!! I still had food anxiety as I was scared of the repercussions, so I ate a pretty bland diet. About a month later, I had tapered my way down to 20mg of prednisone but the symptoms were creeping their way back. Diarrhea first, then came that tell tale dull pain which continued to get worse. So, my gastro bumped me back up to 40mg of prednisone again but this time, no change. He then went to 50mg and still nothing. I started to feel like this was as good as it was going to get and when I asked him, he said absolutely not, no one should settle for this to be a normal feeling. He really didn’t want me to be on that high of a dosage of prednisone for long so it was time to start discussing an alternative. He mentioned the medication called Imuran. I went home, looked it up and based off of the stories I read of people’s side effects, I was immediately scared off. I expressed my concerns, so he said we would try to bump up my intake of sulfasalazine along with the prednisone and see if there was any change. 3 weeks later, I was still experiencing my usual 10-15 times on the toilet throughout the night and early morning, each accompanied with pain. At my next visit, he thought maybe I was just experiencing more of IBS symptoms, so he wanted to do a flexiscope to make sure before finally putting me on Imuran. We had tried to hold off this long and by now, it had been 4 months since my diagnosis with very little relief. The scope showed that I was still having a severe flare of ulcerative colitis and the we got the blood work started to put me on Imuran. So, that&# 039;s where I’m at today, only 2 days in to the new meds and feeling nervous. Anyone have any advice?

Leah’s Medications:

3g – Sulfasalazine
40mg – Prednisone
75mg – Imuran

written by Leah N

submitted in the colitis venting area




imuran

5 Responses to Me and My GI Tract Are Fighting!

  1. Adam
    Adam August 2, 2015 at 9:11 am #

    Hey Leah,

    Thanks so much for sharing, and I hope things are settling down for you. Have you seen any positive improvements since you posted?

    Also, If you haven’t already, there is a page here with reviews of the med azathioprine, aka: Imuran:

    http://www.ihaveuc.com/azathioprine/

    So some good stuff for you to check out there.

    I don’t have any personal experience with imuran, so I can’t give you a personal take, but most certainly it is a medication that has been treating UC’ers for an awful long time. And definitely quite a few people get some good results. I hope that happens with you. Either way, there’s a load of other treatments and meds, diet changes (supplements, foods, heck…even Extra Virgin Olive Oil (right G:), and more, so don’t feel like options are limited cause they are not. And of course you’ll see many stories here from folks who have opted or gone down the surgery road.

    Get educated about your options, the disease, and most importantly, realize that the first year is often the hardest for the UC folk like you and me. It does most definitely get better, easier, and there will be many oh days where you don’t think about UC one bit.

    wishing you the best, and thx for posting & sharing your pic,

    -Adam

  2. Julie August 2, 2015 at 11:13 am #

    Hi Leah,

    My daughter has severe UC and also lives in Chicago. It took her almost 2 years to finally find a medicine that worked and that she wasn’t allergic to. I don’t know who your doctor is, but she fired her first doctor at University of Chicago and now goes to Garth Swanson at Rush, who is the doctor that worked extremely hard at getting her into remission. She’s been in remission for 3 years now (just got married 3 months ago), so it is possible to feel better. She did take Imuran, but sadly, it was one of the meds that she was allergic to, so I can’t tell you much more than that. I will say that I can’t say enough good things about Dr. Swanson, though. I hope that you find someone to help you and Adam’s right–the first year seems to be the hardest. Hang in there. It does get better.

  3. Dan August 2, 2015 at 1:28 pm #

    Hi Leah. Sorry to hear about your situation. This time last year I went through almost exactly the same thing. 40mg prednisone for 2 months. My symptoms seemed to improve and then came back again. Lots of bleeding and I became anemic, ended up in emergency after passing out on the subway in New York, where I was living at the time.

    In hospital, they put me up to 60mg Pred plus mesalamine via tablets and enema. After about a week of this, the flare finally settled down. I has become severely anemic and dehydrated so they also gave me a huge amount of iv fluids. I had lost a lot of weight – from 83kg down to 58kg.

    Some advice from my experience:
    – get a second opinion from another gastroenterologist
    – stay hydrated with hydralyte
    – try the mesalamine enemas
    – try going gluten free during this flare up
    – keep eating meat – salmon,chicken, clams, oysters for iron
    – low fiber foods are best -‘no fruit’
    – be open to healing from anywhere and everywhere

    Really wish you well Leah and keeping you in my thoughts. It’s such a weird thing to go through. Ihaveuc is a great community and you’ll find lots of great stuff to read that Adam has put together. You will eventually improve, don’t stress. Good luck!!

  4. Lady August 2, 2015 at 10:25 pm #

    I take 50 Meg’s and I half it, one in the morn and the other half at noght. I am in remission and all I can say is I hope it works a long time. Good luck

  5. Laura August 3, 2015 at 2:48 am #

    Hi! I am also in my first year of diagnosis so I know how it feels to go one step forward, two steps back :-(

    I went on Imuran 100mg daily, in January after being hospitalised with a flare up.
    I tapered off the steroids and had 3 perfect months. I am now battling another mild flare up (I have symptoms, but my blood work shows nothing :-S )

    I have been really lucky on Imuran – very few side effects if at all. I had no nausea, no pancreatitis – nothing. Slight tiredness is all I have experienced. My blood work always comes back perfect. I don’t have coughs and colds all the time like I thought I would. The only thing I had was a bad water infection (UTI, Cystitis) that came on really quickly and it was nasty. But the docs immediately gave me a weeks antiobiotics and I was fine.

    I know that a lot of people do have side effects and are unable to stay on Imuran, but I wanted you to know that some people are totally fine on it. With regards to the possible long term effects, I was totally against it at first, but I asked loads of questions, and it seems that as long as the dose is suited to your weight the chances of nasty diseases down the line are minimal, and compared to a normal persons chances, only marginally higher. I don’t even think about it now.

    I do burn more quickly in the sun, so I just apply sunscreen more frequently, but I’m not obsessive about it.

    If it works, it could give you years of remission with only mild flare ups that are managable. For me it is two tiny tablets every day and I don’t think twice about it now, and you do get used to the frequet blood tests, it seems like a distant memory now they are only every three months.

    Good luck and big hugs! x

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