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Ulcerative Colitis
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Posted 8/20/2010 8:48 PM (GMT 0)
Ok I had my 2nd infusion of Infliximab a couple of months ago, the 2 infusions seemed to have done the trick and I was very nearly in remission, I was told I didn't need any more so I was to carry on with the other meds I was on.  I had about 6 weeks of feeling pretty good with 80% of my symptoms gone and it was great. I have been looking into going back to work full time ( I am only 24 and havnt worked full time for nearly 2 years now) but my symptoms gradually increased, and I'm pretty much back were I was before...I'm bleeding again, I have lost 1/4 stone in less than a week, and basically can't eat anything without feeling sick/ retching and without pain. I'm also experiencing urgency and frequency. I have been intouch with the IBD nurse at the hospital who has put me on enemas and supps, but I'm not confident these will work as I have been on them plenty of times before. I'm concerned as to what the next option is, I need to be back full time because of money situations but I'm not physically able to.

Does anyone have any ideas on the best things to eat in order to at least stay the weight I am and not lose any more, but at the same time to keep me going throughout the day?? I'm so fed up.

Posted 8/20/2010 9:48 PM (GMT 0)
I don't really know if i can help you (I've always been trying to LOSE weight rather than gain it LOL), but what about protein shakes? Or a drink like Ensure to help provide nutrients and maintain weight?

Okay, can you let me know how many pounds a "stone" is? I hear that term a lot but have no frame of reference for what it means!! :)
Posted 8/20/2010 9:52 PM (GMT 0)
I don't know why they would say you didn't need any more treatment after 2 months? I thought people use these medications ongoing? I am sorry you're flaring up. I am feeling terrible too... skull
Posted 8/21/2010 2:12 PM (GMT 0)
I'm really confused as to why in the UK they just do a couple of doses of Remicade. In the US it's used as an on-going treatment. Will they give you more Remicade? It sounds like it really works for you! ;o(
Posted 8/21/2010 2:58 PM (GMT 0)
I believe there is a potential problem whereby if you stop remicade, you can develop anti-bodies that keep you from being able to take it again. Something sounds fishy. Can you go to a different clinic or see another doctor?
Posted 8/21/2010 4:11 PM (GMT 0)
I have had colitis for the last ten years and I had never been in remission until last January. Unfortunately, have just recently began experiencing another flare up and I believe that it occurred because I wasn't eating properly and I was under extreme amounts of stress. I don't know what triggers your flare ups, but I know for myself that caffeine, chocolate, fast food and too many processed foods really negatively affect me. I find that the best food to eat during flare ups is generally rice (brown or white), fish, yogurt with probiotics, and mashed potatoes with gravy. I also drink Boost which is like Ensure, and water is good as well. I have heard that acidic foods and drinks are not good for people with colitis, as well as corn and grapes. You should decrease your fibre intake when in a flare up and increase your fibre intake when in remission or feeling better. I steer clear of alcohol most of the time because I know for myself that it causes problems in relation to my colitis. Also, eating nuts isn't very good either unless it's just a handful. I know getting protein is super good, but avoid red meats. I think that working out a bit every day also helps as well as getting vitamin D from the sun and/or taking a vitamin D supplement. A year ago I was incredibly anemic and had lost a lot of my hair so I started taking vitamin D and iron pills and now my hair is thick and shiny again. I also find it beneficial to eat regularly and not let myself go hungry because then my symptoms just get worse. It's also extremely important to avoid stress, at least that's what I find I need to do because stress just makes my colitis symptoms worse - I don't know if that's the case for everyone though....
I don't want to assume that you haven't tried or you don't know but maybe you should take some time to experiment and find out what triggers your flare ups/symptoms so you can fix it. I hope that I was of some help but it sounds like your worse off than I am, so I don't know if what I try to do would work for you.
I hope you feel better soon!
Posted 8/21/2010 6:32 PM (GMT 0)

kelli_C said...

Okay, can you let me know how many pounds a "stone" is? I hear that term a lot but have no frame of reference for what it means!! :)

1 st. = 14 lbs.
Posted 8/21/2010 7:47 PM (GMT 0)
Like others are saying I would try and get back on Remicade asap. Here in the states they do one dose then another 2 weeks after that then 4 weeks after that and ongoing every 2months to maintain. It sounds like you just had the loading dose and are due for your next maint?
Posted 8/21/2010 8:24 PM (GMT 0)

Thank you everyone for your replies and to Durango kid for confirming what stones are in relation to pounds!

I had completely forgotten about the antibodies when stopping Remicade and restarting. When I went for my flexi sig the consultant told me that the Remicade had worked so well for the first 2 doses that it had very nearly completely cleared the inflammation up and that I didn't need to take it anymore. (He was very reluctant for me to take the Remicade in the first case because of my age and how strong it is.) But anyway he started me back on Asacol tablets in order to get rid of the last bit of inflammation. Like I've mentioned previously I was doing great for 5/6 weeks and now slipped back.

Not sure what to do now, I guess I'll wait til my next appointment. This is already my second opinion and whilst I don't particularly like the consultant that did the flexi sig I do completely trust the hospital I am now being treated at. Although I'm concerned now that I won't be able to go back on the Remicade. shakehead Hmmm.

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