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second flare hospital admission.

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Ulcerative Colitis
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Posted 11/15/2012 7:43 PM (GMT 0)
Heya everyone,

I don't know if you remember my last posts but I just wanted to update you on my experience of ulcerative colitis. I'm currently in my second flare up which has dragged on and on and I tried everything unsuccessfully until after a couple of months am back in hospital for a week so far. My first flare left me hospitalized for 6 weeks so I was keen to try everything and am gutted its come to this.

I first got symptoms of my second at the beginning of September after a massive stress in my life. Before this I had lived medication free for a year without any hitches (against my go consultanta advice. Was supposed to be taking azathioprine and mesalazine as maintenance meds).

Anyway in September I got mucus in my stools and the next day blood. Straight away I started taking 40mg of prednisolone, 4.6g mesalazine daily, 1 pentasa enema at night. This seemed to put me into a remission bit I couldn't taperthe steroids at all below 40mg without blood, pain and mucus returning. I stayed on 40mg for 2 months but even that didn't keep me in remission and so was started on 100mg azathiprine ontop of all the other meds.

A week after starting azathioprine my bleeding and d have got so bad my Dr called me to be admitted to hospital and receive IV steroids (100ml hydrocortisone) these have had absolutely no effect. My consultant has now said I will either be put on ciclosporin or infliximab - for which I opted for infliximab.

My question is, what is wrong with me!? I've only had 2 flares and both have put me in hospital. I was do careful to do everything to avoid hospital in this flare and my bowel has just continued to get more and more inflamed despite taking every medicine under the sun and every supplement I could get my hands on. I am not intolerant to mesalazine as my blood work is coming back fine, so why doesnt it work when others has success??

I have heard people say treat from both ends with mesalazine and I've been on the highest dose with pred and I still deteriorate. I want to know honestly in your opinions am I immune to all the traditional medications and am I going to end up needing my bowel removed? I'm so worried and frustrated.

Many thanks for help
Posted 11/15/2012 9:50 PM (GMT 0)
Maybe time to try Humira or Remicade like drugs. It's the next step I think from where you are.
Posted 11/15/2012 10:00 PM (GMT 0)
@xeekk infliximan is Remicade

sad to hear your news. I read that 2nd flares are often worse and sometimes less responsive to medications. I hope the Remicade works for you. (My 1st flare has lasted 3 years, but I am much improved today and slowly improving from 5-asa (sometimes enema), probiotics, and 10mg Pred.)

After a 1st flare so bad you had to be hospitalized, it seems very daring to try maintence med free. if this current flare get tamed, maybe use a 5-asa maintence plan.
Posted 11/16/2012 9:44 AM (GMT 0)
Thank you for the replies,

I love this forum! So nice to be able to talk to people who know. I don't have a supportive family so its nice to have this extended uc family to vent to. The reason I went med free for a year after I reachef remission from my first flare was because I was young, dumb and went into denial about ever having uc, convinced myself they'd misdiagnosed me. I felt so well and normal in remission I didn't want to take these scary meds with all there side effects. So I stopped going to follow up appointments with GI and stopped medicine.

If I've learnt one thing I know that I definitely do have this condition now and I will never risk going med free again if I do get into a remission. My uncle has ulcerative colitis also and ended up needing a colostomy which scares me. This was over a decade ago and I know medicine has improved amazingly all the time. I've always been the kind of girl who hates taking medicine, won't even take pain killers. So now popping tonnes of pills is a
blow.

I am still in hospital at the moment. I had another flexi sigmoidoscopy last night, was heavily sedated as I've never tolerated them well in the past. I don't remember a lot but am seeing consultant this morning to find out whether I will be started on infliximab soon. All I remember is that my colitis has got more inflamed since this flare started in september, I had a sigmoid at the start of this secondg flare which showed mild inflmation. Seems so bizarre to me that I can continue flaring up worse when taking all these medicines.

I'll let you know what my doctor says today. I'm a little worried about infliximab but if it gets me well I'll try anything. I just want to get out of hospital and back to college now. I can't believe some of you guys have flares that last for years! How severe are your symptoms, at the moment I'm losing lots of blood. Can't imagine what it would be like to go on for years?

Best wishes and thanks again
Stacey
Posted 11/16/2012 1:07 PM (GMT 0)
Stacey, I was in your shoes one time. I mean I was never hospitalized for my Uc but at your age I was in denial too. I stopped my meds or didn't take them as I should and it landed me in a whopper of a flare - talk about a slap of reality eh? But live and learn I guess.

Some people just don't respond like they should to these meds. These meds are not a one size fits all kind of thing. But hopefully the Remicade will give you back your life and you get can out of the hospital. I've been on Remi for little over a year and I can honestly say that I have never felt better! So maybe you will respond well to it.

Hang in there and anytime you need to talk, vent or have a question, don't hesitate to come here where we all truly understand :)
Posted 11/20/2012 1:10 PM (GMT 0)
Thanks for replies everyone,

Just an update for everyone. I'm still a hospital inpatient for 9 days now. I've been on IV hydrocortisone 100ml a day for the last 9 days and deteriorated. My flexi sigmoidoscopy from Thursday showed severe inflammation in my left bowel and I am starting infliximab today, now that all my pre tests have come back fine. I'm praying to god infliximab works as I feel like I'm running out of options. I'm also on azathioprine 100mg a day for about a week and a half so hoping this and inflimimab will get me out of this awful flare. Also still on maximum dose of mesalazine with no effect. I know azathioprine takes up to 12 weeks to start working so praying I'm not unresponsive to it by the time that comes. The amount of blood I'm losing at the moment is terrifying I'm having 8 bm a day, mostly pure blood. I just pray that infliximab will help stop the gap between azathioprine working and I can save my bowel. I'm in so much pain. Honestly will never be so dumb to not take maintenance meds again. I know realise how real and dangerous this disease can be, just praying its not too late!
Posted 11/20/2012 1:34 PM (GMT 0)
Good luck! I hope that Remicade works well for you!
Posted 11/20/2012 6:33 PM (GMT 0)
Sending you good thoughts
Posted 11/20/2012 9:02 PM (GMT 0)
Thank yooou! Had my first infliximab this afternoon without any allergic reactions so far fingers crossed. Just need to sit tight and pray. Thanks for the positive thoughts everybody means so much right now :)
Posted 11/20/2012 10:00 PM (GMT 0)
Hi Stacey, sending good thoughts your way. Very similar situation here, I'm 25 hospitalized for my second-ish flare (first one never totally went away) and just had my first infliximab infusion last night. I hope it works for us both!!!
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