Feeling disappointed :(

[hannah-rose]

Hi everyone,

I'm not sure how many of you will remember me, I haven't posted on here in years since I struggled with being diagnosed with Crohn's. About 2011 I was diagnosed and was on Infliximab and Humira to heal a severe perianal ulcer. The ulcer healed and I have been healthy since about 2012 when I had a minor flare up due to stress, causing the ulcer to rear it's ugly head again.

Last October I caught a tummy bug while on holiday in the Caribbean, which went away on it's own, but on and off since then I've been having 'tummy troubles'. This was a big surprise for me because I've never had any intestinal inflammation/symptoms of Crohn's disease. I always prided myself on having a strong stomach, and could eat whatever I liked.

Anyway, after a few weeks of bad diarrhoea my consultant scheduled me for a flexible sigmoidoscopy which I had yesterday. I was fairly sure they weren't going to find anything, and thought the diarrhoea was unrelated IBS or something else. Unfortunately the doctor found inflammation (albeit fairly mild) in my large bowel. My consultant wanted me to start Humira again but in my post-procedure drugged up state I think I was a bit resistant so I have started Pentasa until I next see him on the 26th April.

I'm disappointed that the Crohn's is spreading, and now I know that's what's causing my symptoms, I'm really paranoid about any little twinge or pain in my tummy, thinking my bowel is going to burst or disintegrate or something! It's frightening having to go back on medication, possibly Humira (oh yey fun injections again). It's a whole new challenge working out what I can/can't eat too, as I've always just eaten what I want but I want to help myself too by not eating anything that might set the inflammation off.

Anyway just wanted to share, feeling a bit rubbish but I'm hoping that the symptoms will go soon x x

 

[ronroush7]

I am sorry this is happening to you. If you go back on Humira, ask the doctor about testing you for antibodies. I hope you feel better soon.

 

[Grumbletum]

Hi Hannah
I remember you well and the struggles you were having. I'm so sorry to hear Crohn's has reared its ugly head again. I can also empathise. After 2 years of remission, I felt confident to come to Burma to work, but a year and a half later, I went to the doc with what I thought was a violent stomach bug and it turns out the Crohn's is back, but also mild at the moment. Had a bit of a nasty surprise with the PVT though.
The doc in Bangkok prescribed Pentasa and I was a bit sceptical because my last GI in the UK said I was 'drug resistant' and took me off everything after the resection. However the Pentasa seems to be working and my current GI says probably the meds didn't work before because the Crohn's was so severe.
Are you feeling any better on the Pentasa? Here's hoping it will do the trick and you won't have to go on to anything stronger again.

 

[hannah-rose]

Hi Grumbletum I remember you too

I'm sorry to hear that you're unwell too, are you still in Burma or have you had to come back to the UK? I think we get false hope when we feel well for a number of years and then out of the blue back come the symptoms!

After the scope my doctor said the plan was to start Humira again but after reading ronroush7's comment on another of my posts I asked him about antibodies (I was super doped up post-procedure) and he said ok let's try Pentasa first. Touch wood, since the firs dose on Pentasa the diarrhoea has completely stopped, so maybe because the inflammation was mild/mild-moderate, the Pentasa is actually working. I'm slightly paranoid though, whenever I feel a twinge in my abdomen I imagine my colon all ulcerated and bleeding - it's freaking me out. I'm seeing the doctor again in just over a week so I'll see what he says then.

Do you have to watch what you eat to keep your symptoms in check?

Hannah x

 

[Grumbletum]

Hi Hannah
I'm still in Burma. The company I work for give us health care cover with Bupa, thank goodness. Only thing is, facilities are very poor in Myanmar so the international clinic sends patients to Bangkok if it's something serious. The hospital and the docs there are very good - I was in hospital for 2 weeks in February and am going back and forward once a month at the moment for check ups.
I've had to watch what I eat ever since I first flared and found that what was aggravating me during the first flare, still aggravated me in remission. The addition now is avoiding oily greasy food as I think I have bile malabsorption after the resection.
I have a stricture at the surgery site so am avoiding red meat the moment as it tends to make me feel blocked.