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Crohn's terminal ileum pain

(7 Posts)
MollyHuaCha Fri 03-Mar-17 19:05:00

Sorry, couldn't think of a witty title. I'm just looking for a few words of support from any lovely fellow Crohnies - I know you're there guys!

Lower right abdominal pain has been building over the last few days. It's a familiar terminal ileum pain I've had for decades and it flares up sometimes. Getting really sore now, stabbing pains that I can't seem to calm. My next Infliximab treatment is nearly 4 weeks away.

Questions for anyone:

At this stage, is it better to eat or not eat?
Do hot water bottles actually help the pain? My Ibd team say that hot water bottles actually divert blood away from the organs to the skin surface, so actually are doing harm. But to me they just feel comforting so I use them...

Any other thoughts or words of wisdom gladly received smile. It's not a medical emergency, I'm not in agony, not desperately ill, just feeling sorry for myself and miserable sad

Current meds: azathioprine, Infliximab, Pentasa

gobbin Sat 04-Mar-17 10:56:11

If a hot water bottle works, use it. It won't do any harm and your IBD team is talking bollocks. If the Infliximab/Aza combination is not holding your symptoms then tell your IBD nurse at the next infusion. Also let your consultant know, describing how it is on your worst days.

There are other treatments available that might suit you better. I went from Infliximab (doing well on it, but had to stop after surgery) to Humira and have had the best Crohns year since 1994.

MollyHuaCha Sat 04-Mar-17 17:51:55

Thanks Gobbin, I appreciate your time in replying. brewcake

BobbinThreadbare123 Sat 04-Mar-17 17:56:30

I have UC but take almost the same drugs. I'm due to begin Humira soon. Hot water bottle is a lovely comforting thing for me. Nobody has ever suggested not to use it. Have you got an IBD nurse?

MollyHuaCha Sat 04-Mar-17 20:36:50

First Gobbin, then Bobbin! smile Yes, I have access to a lovely nursing team by email. I don't think they'd be interested in me and my mithering though because I'm not doubled up in pain. And I see them every 8 weeks anyway. I've dug the hw bottle out. Feel slightly rebellious doing so...

fireandicecubes Sat 04-Mar-17 22:56:03

I'm a great believer in whatever works for you is ok, so hot water bottle, heat pad or hot bath is ok. I can't eat if I'm in a flare but I have Modulen to replace calories & nutrients & rest my bowel. I had an ileocaecal resection 2 years ago so I don't have a terminal ileum now & it was the best thing I ever did, I've been in remission since & ive never been so well. Hope you feel better soonx

MollyHuaCha Sun 05-Mar-17 09:03:36

Thanks Fire. Appreciate your reply. Modulen is milk based and I'm intolerant. Can't take Ensure either for the same reason. Previously I've had an elemental diet which tastes vile. But it's so expensive my consultant is reluctant to prescribe it. Having a bad day today sad and it's only 9.00 am!

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