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IBD thread

(7 Posts)
NaiceToMeetYou Thu 08-Feb-18 10:23:36

I thought this might be helpful for people like myself who have an IBD.

I was diagnosed with UC 6 months ago after a flare up which was initially misdiagnosed as IBS. I'm on masalazine atm and haven't flared since, although I still have not nice symptoms.
Due my first iron infusion soon.

BusterGonad Sat 10-Feb-18 15:55:53

I have Crohn's disease, I was diagnosed 2 1/2 years ago, I'm currently on Budesonide and that's it (had 2 flares within 6 weeks) as I moved away for 2 years and couldn't get any medication, I'm currently awaiting MRI results to see if I need surgery or can be put on different meds. I'm feeling a bit apprehensive but trying to not worry!

fireandicecubes Sat 10-Feb-18 22:45:07

I have Crohns, was diagnosed 6 years ago after almost 20 years of problems - I was also originally diagnosed with IBS but I knew it was something else even though my blood tests showed no inflammation until I was in a massive flare up weighing less than 7 stone & needing 8 weeks of steroids & a hospital stay of 3 weeks. I had surgery 3 years ago (35 cm of bowel removed at the terminal ileum) as I has a stricture & a fistula (hole in my bowel between small & large intestine) & I’ve been in remissiotn since. I’m still on a minimum dose of medication - I’m on Mercaptopurine but I can’t remember the last time I’ve been this well. I’ve had 3 iron infusions & 3 blood transfusions due to severe anaemia & they really do help. I do worry that it’ll rear its ugly head again one day but at the moment I’m just glad I can live a normal life after years of illness & problems. I’ve found the Crohns & Colitis forum on Facebook really fantastic support.

BusterGonad Sat 10-Feb-18 22:48:11

May I ask Fire what recovery is like after surgery?

sproutsandparsnips Sat 10-Feb-18 23:08:48

Bustergonad I am by no means an expert but there are various disease modifying drugs available that may help. Have you been offered humira or infliximab - could they be an option?

fireandicecubes Sun 11-Feb-18 21:07:38

Buster my recovery was good, I was home after 6 days, driving after 6 weeks (open surgery so had to wait) & I went back to work about 3 months after my op. I probably could have gone back after 8 weeks but my surgeon & GI consultant wouldn’t let me as they wanted me back to my normal weight. I was on a liquid only diet (Modulen) for 5 weeks before the surgery to try to get the swelling in my bowel down & avoid a stoma - it was so hard & I lost nearly a stone but it worked & the surgeon was able to join the bowel. I had an epidural for pain relief & my hospital uses the enhanced recovery procedure so I was given water when I was moved back to the ward, food the next morning & they made me get up to sit in the chair to eat & then I was expected to walk to the end of the ward that afternoon. I can honestly say that the surgery was the best thing I ever did & I’m hoping I can stay well for a long time.

BusterGonad Mon 12-Feb-18 17:18:45

Wow Fire that sounds like major life changing surgery! I'm really really hoping to go down the medicated route, hopefully I'll find out soon, I'm on my last 7 days of budenside. I'm so glad as I'm feeling so bloated and fat at the moment!

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