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Hi everyone! It's been a while since I've been here because I've been dealing, or rather trying to deal, with my latest flare. I think I'm at a dead end medication-wise and I'm a little scared about what will come next for me. I've had Crohn's for 22 years and luckily the only surgery needed was drainage of an abcess. I've tried all drugs available that I am aware of. Prednisone, as bad as it is to the body long-term, was always my fail-safe, but now it's lost its efficacy. It looks like surgery is my last and only option. I will be consulting with my GI soon about that.

I'm a little scared about it. I don't have details about what kind of surgery could be done for me. if anyone would like to share your experience with surgery for Crohn's I would love to hear from you.

Thanks for all your support,
I haven't had any surgeries, just wanted to pipe in and say that I hope all works out for you and that you have some relief soon. Good Luck, sending healing thougts your way.
Hi Amy,

I'm 23 years old and have had two surgeries. I had an ileostomy and had to have the bag for about 3 months. I just recently got it reversed, so can finally go to the bathroom again. So far I have been feeling pretty good, though it was pretty tough being in the hospital so much. Talk to you GI, and if there is a lot of damage going on, I would suggest getting it taken out and reattached and then getting on a medicaition that will keep things under control. Surgery is not fun at all, but I was able to get through it and am now back to my normal life and back to working full time. Its not easy, but if it is your last option then it may be the best thing for you. I wish the best of luck for you, feel free to ask me any questions regarding surgery. I've been through so much with these surgeries. I was hospitalized for a month, and just recently for 8 days, had a PICC line, was fed through a feeding tube for weeks, needed a blood transfusion, etc.



Staff member
Depending on the amount of damage and what all needs to be removed they may be able to do the surgery laparoscopic which means that they make small incisions and use cameras to take out what they need to which leave less scaring. You should be given pain killers after your surgery, mine was a morphine pump that I was allowed to use every 15 min for about 3 days. Some people on here have mentioned being given antibiotics after their surgery but I remember no such thing happening after mine (but mine was over 10 years ago too). It is painful, I won't lie about that. It will be very hard to move around especially depending on what type of surgery is preformed (laprascopic vs full surgery) because your muscles have been cut through and it takes a while to heal. Worst pain of my life when they said I had to sit up the day of my surgery. I've never dealt with child birth but I haven't heard many mention that the pain is so bad you want to vomit. Child birth sounds like a breeze compared to the surgery I had. You should be able to walk around within a few days to a week depending on the type of surgery preformed. I believe they wait for you to pass gas before you're allowed to eat again and its a liquid diet followed by a light diet (low residue/flavor that sort of thing). They started me out on liquids first, maybe a few days after my surgery. My healing process was taking longer than the average person though.

My surgery was done back in 1999 and was both laparoscopic and full surgery (larger incision, larger scar). Generally people have no complications after surgery such as infection and such but sometimes people do, I was one of them. High doses of prenisone can make your tissue layers very thick and the thicker the layer of tissue to skin that needs to heal, the more chances of your skin layer healing first before your tissue layer which can cause infections, that's what happened to me. They cut the healed skin layer back open (right before my eyes too) and gauze had to be packed into the wound twice a day until it healed from the inside out. It took me almost 2 months to heal because of the infection.

Edit: Yes it all sounds awful but remember this, I was in remission for 11 years after my surgery. I'm not fully out of remission now but that's a long time of feeling almost normal again. Even after surgery you may experience some Crohns symptoms but they will be slight compared to what you've been dealing with.

Edit 2: I had a small bowel resection (8 inches removed) where the small intestine meets the large intestine (ileum).
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can't offer any advice but i'm very interested in this thread as i'm going for a small bowel resection on the 22nd Nov and pretty nervous, in general most people seem to have positive experiences after they get over the surgery so i'm hoping i'm one of them!!! i've had 2 c sections so i'd be interested to hear how the pain compares. All the best anyway.


Hi Amy

I've not had any Crohn's surgery neither, but wanted you to know that I'll be thinking of you during this difficult decision time.
From what I've read on here, surgery has been the best thing that's ever happened to some peeps, hope you get something sorted, and relief soon


Hi Amy, My daughter had surgery in August, my thread was called worried, moi, yes?

She is doing great now!!!!!!

I just had surgery, and it was done laproscopically. They went in to clear blockage and explore what it going on in areas they havnt been able to get to other ways. I was lucky and they cleared my blockage so I kept all my intestines. The took numerous biopsies from my intestines and mesenteric nodes. They also took my gallbladder and a hernia that was causing issues. Im a week and a half into recovery and things are still up and down...trying to get back to normal. I wish you luck and just think when its all done with...it wont seem that bad, in comparision to what youve been through with this disease!!
Thank you all so much for sharing your stories and for the well-wishes. It means a lot to me. I am going to see my GI tomorrow to get more information on it and will keep you posted. Thank you all!!


Super Moderator
Hi Amy, :bigwave:

Roo has had small bowel surgery. Unfortunately in her situation it was an emergency and so was open surgery. Good news is, even though she had worse case scenario, her post op period was uneventful and she has now been in remission for 4 years.

Keep us posted on how you go with the GI and what you decide. Good luck!!!

All the best, :hug:


Chief Dandelion Picker
Hi, Amy: Thinking of you as you start to look at potential surgery options and work through the decision-making progress. Take good care!
Hello there.
Same as Dustykat's daughter for me but been in remission for 6 months so far. It's weird to say it but I'd rather get another surgery then be on those drugs for a long period of time.
Thank you all for your posts! It means so much to me to know you all care!!

So here's my update: I consulted with my GI yesterday regarding options. She told me she was very worried about surgery for me. There is definite inflammation, but it turns out that she's not 100% certain it's Crohn's!? (I was diagnosed, and have always thought I've had, Crohn's 22 years ago!)
Apparently I have "Indeterminate IBD"? Has anyone heard of this, or have this?

To top that off, she believes other factors are involved which are causing my symptoms (IBS, Fibromyalgia) and surgery may not improve my quality of life. I could be left no better than I am now with less bowel than I have now to work with.

I am getting a colonoscopy today to show the extent of inflammation and she recommends I take the results to a specialist up in Mt Sinai.

What a crazy ride....


Bourbon Bandito
I think "Indeterminate IBD" means they know it's IBD, they just aren't if it's CD or UC. I had that diagnosis for a few months after my first flare.
OMG 22 years to having been possibly missdiagnosed!!I think we all know as individuals, especially after 22 years if we have the disease, despite what doctors and science knows. Amy, I am sorry your going through this time, its just the stress you dont need in you life. I wish you the best of luck in getting things figured out and finding a solution thats right for you. Please keep us posted
I thought your GI was a specialist. What kind of specialist would this person be?[/QUOTE]

Hi Crabby! From what I gather the specialist at Mt Sinai is more of a consultant for a second opinion. My current specialist will continue to be my primary GI.

Thank you all for your posts and concern. I am truly humbled by all of your support.

Here's the update:
I had a colonoscopy today by my GI specialist. Yesterday she told me she was very worried about me having surgery because she wasn't sure if I had CD or UC and that other factors may be involved in my symptoms (IBS, Fibromyalgia). However, after what she found during the procedure today she said she's a "convert" and believes surgery would be my best option.

She said I have pancolitis(?) which means the entire colon from rectum to cecum is inflamed. The terminal ileum was normal. Biopsies were taken, of course. But from the looks of it my doctor is now quite convinced that I've been mis-diagnosed for 22 years and actually have UC. (That would explain why so many of the Crohn's medications haven't helped me.)

I will still get a second opinion from the Mt Sinai consultant, but it looks like surgery is in my future. She said it'd be a two step surgery resulting in a J-pouch. She also said I'm looking at about a year before I am fully healed and have a better quality of life.

My head is spinning from all of this. What a game-changer. What a week.

Again, I thank you all for your concern. If this diagnosis is true and I don't have Crohn's would it be ok for me to continue to stop by from time to time? You all have been an incredible support system for me!:wink:


Super Moderator
Wow, no wonder your head spinning!

I think the name of the forum is a bit deceptive. It is for people with IBD, so CD and UC. Anyway, even if you didn't have either, which I don't, I don't think anyone would mind if you stayed around but since you do your more qualified than me! :)

Well now you know what you do have I hope you can get things sorted. There are others here that have had the surgery the doc is talking to you about so maybe put J pouch into the search.

Good luck and keep us posted

Take care, :)


Chief Dandelion Picker
Woah, AmyW, what a week indeed. I can't imagine how difficult life must be when the entire colon is inflamed. Wishing you best of success with the surgery and recovery. (And, you'd better stick around the forum! Hee hee. Take care, Sweetie!


Staff member
Of course you can stick around silly. :p All those years with the wrong diagnosis and the medications not working for that long, I can't even imagine how awful that would be. Let us know what the other specialist says and if/when your surgery will be. We have a sub forum in General Discussion dedicated for people with stomas so you'll definitely still be able to get help from this forum.
Ohhh Amy, my heart goes out to you....but you must be kinda relieved to have some possible answers as to why things havnt worked out this far. I wonder if it would be possible to try some UC meds to see if you have improvment? Try not to stress out too much, you dont need to make yourself any more ill. Keep us posted Im interested to hear what the second opinion says.....FYI, my second was awsome, finally someone willing to fight for me and get the answers I want!! Good Luck~
Hi! I just wanted to send a quick update...

I made the trip up to Mt Sinai yesterday. The doctor was very thorough and very confident that I do in fact have CD not UC. Her options for me were to 1) dramatically increase my remicade dose (20mg/kg every 4 weeks! I'm on 10 every 6 now) or 2) try Humira again with a much higher dose, 3) enroll in some research drug studies (which means I would have to take the 2 1/2 hour trip up there every two weeks) or surgery. Because the CD is confined to my colon and rectum I am a surgical candidate and she recommended a proctocholectomy which means I'll have a bag for the rest of my life.

I have decided to get the surgery. I am relieved and scared by this. I definitely need to learn more about it, but I've had enough of the drugs. She told me recovery time is about 3 weeks (barring any complications) and that I will be off ALL meds once I'm healed!! I have been on medication of one sort or another each day for the last 22 years. The thought of not needing them anymore is like a miracle.

I truly appreciate all of your support and thank you for "listening" to my story! I'll keep you posted on any news.

Thanks - Amy
i'm so glad you've made a decision and good luck with the surgery, I had surgery last Monday and i am already off all medication (well take my last steroid tomorrow.. yippee!!) I had no idea that I would've been off it so soon so am well pleased, I hope you to have great success and relief after all these years.


I've had that surgery and have a permanent colostomy too. Just had my first scope with Oscar 2 weeks ago and I have no active Crohn's anywhere in my system, and I haven't been on meds for almost a year now :). I hope your surgery goes as well as mine did, and that you find some well deserved relief! Any questions, feel free to PM me, or ask in the stoma subforum (I'm usually lurking around in there...lol)

Good luck!
I was supposed to have Surgery DEC 13 of this year. Flared up really bad with pain and constipation on Thanksgiving day. Went to ER. Next day found out from CT that where my crohns is (where the small and large intestine meet; i believe the Ileum Cecum valve), I had a perforation and an abscess was there too. So I ended up having surgery last Saturday (NOV 27). Not sure the exact measurements of what they removed, but I had some of my small and large intestine removed; along with my appendix. I was discharged from the hospital on Thursday (DEC 2).

My road to recovery is up and down. I think I am catching a cold at the same time, so i feel like crap. Got shivers here and there...ugh. Also, my surgery was not done laproscopic, so i have about a 4/5 inch incision running vertically passed my belly button.

For all those that has had surgery, how long before you start feeling better? I'm nervous right now, because i really don't want my crohns to come back. I'm supposed to be getting my staples out on DEC 13. I hope things turn out for the good.


It took me about 4 months to feel 'normal' again. But I was out and about after about 3 weeks.
Hi kayvank - it's crazy how unpredictable CD can be. How are you feeling? I hope things turn out for the good for you also.

I am meeting with a surgeon tomorrow regarding colectomy. I'm a little nervous, but from what I've read on this forum the overall view is that it is a life-changer for the better. I am really looking forward to getting my life back.

Cindy - I suppose I'll be lurking around the stoma forums soon myself. See you there :)
Hi Amy,
Good luck with your meeting today. I suppose your surgeon is in Philly? I saw a doc at Thomas Jefferson for a 2nd opinion a few times. I was still kinda in denial at that point and ending up having my surgery at Mt Sinai a year or two later.

You are right - many of us here are doing much better after various colectomy surgeries.
Hi Joe! Thanks for the well-wishes! Denial. Yes, I can relate. Despite looking forward to this new chapter in my life the thought of "ousting" my colon is a sobering one that makes me wonder at times if it's the right choice. So many what if's...

But life moves on and I am quite sure this is the right choice for me. I just got home from my appointment with the surgeon. It looks like I'll be admitted Monday to get "tanked" up, as he put it - meaning complete bowel rest, IV fluids and TPN for up to 10 days to get my body ready for the surgery. Luckily I'll only be in-patient for a few of those days then continue at home. Less than a week after that I'll have the proctocolectomy and hopefully be back home in time for the new year!

2011 is looking better already! :)