• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New to this

new to this

Hi all, i'm a 36 yr old female and until Easter this year have been very fortunate never to have suffered from any digestion problems or stomach pain whatsoever. Then out of the blue I started to get gastritis that wouldn't go away then a month later I ended up in A&E with suspected appendicitis. After x-rays, ultrasound scans and blood tests I was sent home (even though my CRP was increasing) and told I was ok.

As the pain was still there I went privately and had a CT scan which showed IBD in the ileum and was diagnosed with crohn's disease and was referred to a GI doc to discuss meds. While waiting for my app I went on holiday were I became very ill, I came home (not sure how I got on the plane!!) and had blood tests the following day which showed my CRP was at 280, hence the fact I was brought into hospital and had another CT scan which showed a perforated bowel and a 4 cm abscess.

After 1 week of antibiotics I felt dramatically better and have remained so since being started on pentasa and prednisolone. I have since had several investigations which show thickening and inflammation of the terminal ileum (the rest of the colon/small intestine appears normal) I am currently waiting to have a sb ressection to remove approx 1 ft of the terminal ileum (reluctantly as I feel so well!), however they will not reduce my meds until then.

Thanks for reading :ysmile:
Welcome Archie!!

Your story sounds very similar to mine! You have definatley found friends who can relate and give you support in this forum! I'm sorry to hear you have been so unwell, but am also pleased that you are so well at the moment. So are the docs doing the ressection to hopefully avoid further problems down the line and remove the perferated bowel and abcess? That's a huge step for you to take so early into your diagnosis. You are very brave.

Welcome once again! I hope you can find as much advice and comfort here as I have



Hi Archie
and welcome fellow Brit

I ended up in A&E 9 months ago with a CRP of 261, so can really empathise! My bowel (terminal ileum) was just about to rupture! I've been on Pred since, just coming off now, it's healed me nice. I was lucky this time! I was told I nearly died! Peritonitis had set in and I was given IV hydrocortisone and Metronidazole. Docs mentioned surgery like yours, but cos I've healed ok, this has been put on hold for the time being. Hoping I won't have to have this done cos I feel so well at the mo! So why not give it a bit more time? Stay on the Pred, let it do it's work.
glad you found us, lots of friends here for you
lotsa luv
Joan xxx
Hi Bethany thank you for your reply, as the perforated bowel contained itself I luckily didn't require emergency surgery at the time however I have vague recollection of the surgeons examining me at the time and saying that I would require sx in the future. I've had different opinions on this which has left me somewhat confused, some say I need to remove the damaged bowel as the risk of re perforation is quite high which obviously can be very serious and I've some advice saying not to have the sx as i'm feeling so good at the mo. I am happy with my GI doc and current surgeon (who are advising me to have surgery) as they were the ones who saw me when I was very ill. I think I just wanted to get some advice from anyones who's had the sx.
Thanks again
Hi Joan, thanks for replying, your story sounds very familiar and it's interesting to hear that your not having sx at the mo, I was totally un decided however after talking with the dr's again I think i'm now headed for surgery. I'm really keen to get off the steroids and my GI doc won't budge on that one til I have the surgery... It's all a bit of a whirlwind really and I think i'm totally in denial!!!
I think that sounds like the best thing you could possibly do - get as much advice from those who have been there. I myself am lucky enough not to have needed any bowel removal just yet. It seems strictureplasties are my thing at the moment, with 4 to date! However there are many people on here I am sure who will be able to give you their 1st hand experience of such things. I think it is a HUGE help in making such decisions though when you are really happy with your docs which it sounds like you are. Have you asked a 2nd opinion of any other doctor just to compare?

Hi Bethany I was lucky enough to get the opinion of 4 Dr's, 2 were for sx and 2 were a bit more hesitant, however it was the 2 that saw me at my worst that are for the sx, they all say that as it has perforated once it's likely that it could happen again therefore they don't want to risk that, also even though i'm feeling great, I am reluctant to go on holiday just in case it's also stopping me doing a heavy workout in the gym (not that I need an excuse for that one!!!). Also I do have a physical job and want to be able to continue with it...


Oh!! ha ha ha
I thought you said it's interesting to hear you're not having SEX at the moment!
and I thought, how does she know!! lol

Hope things work out for you Archie, sounds right tho, if it happened once, chances are it'll happen again, this is when I start worrying too! Cos it nearly did, and next time I might not be so lucky!
take care


Super Moderator
Hi archie and :welcome:

I'm glad you found your way here 'cause this is a great place for support and info.

My daughter has had her terminal ileum removed and has been in remission since the surgery 4 years ago so her outcome has been excellent thus far. She didn't have a choice with her surgery as it was an emergency...... perforated, infarcted bowel and she was septic. If I had had the chance I would have much preferred if we had gone into surgery when she was well and it was a controlled situation but that wasn't to be.

I know it is a difficult decision to have to make and I wish you all the luck in the world with it. It is much better to be in a position of control and having the ability to weigh up your options rather than having no choice at all. I guess the big advantage I see with elective surgery, apart from the obvious, is you would most likely have the least amount of bowel removed in this situation.

Good luck and welcome aboard!

All the best, :)
Ha ha joan :lol2:, that made me laugh you must be thinking how rude!!! and i've only joined... (sx is short for surgery)
Hi Dusty thanks for your reply, you've said exactly what the surgeons have said so it's nice to have it reinforced by someone who's been through it, i'm sorry that your daughter had energency sx but delighted it went well for her. Most people i've chatted to here seem to have really good outcome post surgery and tend to be symptom free for many years so hopefully i'll be joining them, I really really want to come off the steroids ASAP due to their longterm side effects, i'm lucky enough so far that I haven't suffered too much on them (my husband might disagree with this!!!!). Has your daughter got any Crohn's elsewhere or was it just the terminal ileum?


Super Moderator
Roo was undiagnosed until she had surgery but from what they saw it was only the terminal ileum that was affected. She ended up having 60cms of bowel removed and I'm sure if she had had the opportunity to heal as much bowel as possible before surgery she wouldn't have had so much removed but hey it was either that or she wouldn't be here so to say I'm more than thankful would be an understatement! :)
Greetings. I was diagnosed pretty much the same way u were. They tried meds first but that did not help the abscess. It grew so big and so fast, it left me lifeless. They didn't want to do surgery but had no other option. They planned mine out also. But ended up doing it about a month ahead of schedule because the abscess just got too big and dangerous. After the surgery and a few small complications, I was back to normal. Until that little pesky flare returned and the crohns had spread. Lol. But with meeds I currently take to keep it in check, I live a pretty normal life for the most part. Doc said that initially, the meds I took should have kept me in remission but the abscess is what was causing all the problems. The surgery should help you out for the time being. Hopefully for many years. Good luck.
Hi tpd320, thanks for the advice, i'm lucky as my abscess responded well to antibiotics and has nearly gone, although from the last ct scan the stricture remains even with the meds thats why they want to operate, i would be apprehensive that the abscess would return if they don't remove the damaged part of the bowel... all a bit confusing really as i feel i've responded really well to the meds but they're telling me otherwise. Thanks
Hi and welcome. Good luck with your upcoming surgery. I hope all goes well and maybe you will be symptom free for a long time. Keep us all posted
Hi all with the surgeon today and sb resection booked for end of Nov... thanks for all your support and any advice is morw than welcome.