Bowel Resection

[jackdup]

just wondering how many here have had bowel resection surgery and what the experience was like and how much difference it made.

Thank you

[Barnclown]

Maybe my husband’s experience can be helpful:

His Crohns onset in his early teens back in the early 1970s before Crohns was as relatively well understood & steroids + surgery were the main treatments. Over the course of several decades, he had several bowel resections.

The first was due to peritonitis, so emergency surgery - when he was onl6 20 or so & hadn’t yet understood the significance of his Crohns…recovery was v slow & he lost a lot of weight, but the resection saved his life. He had at least 2 more bowel resections over the next 2-3 decades, none emergencies. Each surgery went very smoothly, with the surgical team warning him a stoma may be necessary. But each time he woke up without a stoma.

Since the last resection in the late 1990s, he has not needed more surgery and about 12 years ago in his 50s he actually managed to taper off steroids! Apparently his Crohns is in remission, but of course he is still on meds to manage the side effects of gradually loosing so much bowel (including the ileocecal valve…& there is a stricture in that area so he sticks to a low food residue diet). His long term meds are: Questran, loperamide + vitB12 jabs

He is now very fit & active in retirement…seems miraculous to me, after everything he’s been through over the decades! His older sister also has relatively early onset Crohns, but she was/still is less conscientious about complying with her prescription combined therapy treatment plans + doing self help, lifestyle management: had to have a v big resection removing her whole colon. Since then, she has been doing very well with an ileostomy, leading an active life with a lot of travel

Hope something in there can be useful

[jackdup in reply to Barnclown]

Thanks so much for taking the time and going into detail on your husband’s experience, it is very much appreciated and found it quite informative. They have told me as part if the operation they would also remove my ileocecal valve, and after doing some reading about it am a bit concerned. I know we are all different and everyone may react differently but wondered what symptoms he may have as a result if the removal of the ileocecal valve?

Thanks again for your reply.

[Barnclown in reply to jackdup]

yes, for what it’s worth, i do v much like the way you’re processing all this & considering your situation.

Even after, as a very young guy, he naively let things go bad too long resulting in the big peritonitis emergency, my husband has continued to cautiously postpone surgery because, as he likes to remind me before the surgeries i’ve had: no matter how helpful surgery is, you always have to learn to manage side effects.

For him, i think, the removal of the ileocecal valve has resulted in chronic diarrhea, which he manages with the questran & loperamide. He says no 2 days are ever alike, bowel-wise, so i guess you could say he micromanages his GI tract. But he is very calm about this, just accepting the situation & doing hs best to cope…which of course is partly because his actual crohns has consistently been in remission for years now, which was not EVER expected.

I’m in charge of cooking & have figured out how to make him a variety of hot meals that he really can enjoy, but the stricture where the ileocecal valve was meaning he needs low fibre/low residue food makes our mainstays are braised minced or cubed meats with no veg other than peeled potatoes, white pasta or rice etc…& no fruit other than, say, sieved juices. He reacts badly to the so-called fresh fish we can get here deep in the UK countryside, so we only use tinned fish. if something does create a blockage in the stricture, he has what we call a ‘blow out’ with vomiting & diarrhea, but he is always fine the next day, so far! And he hasn’t had one of these in years

I’m managing my own very early onset autoimmune conditions, which involve inflammatory process throughout my GI tract, mouth to exit. over the last 7 years these probs have finally segued into chronic intestinal failure + intestinal pseudo obstruction, so, ironically, everything we’ve learned from his crohns is helping me a lot now (eg he was relatively briefly on Elemental Nutrition when we first met in the early 1980s, and now i’m in my 5th year doing fine off food on Elemental Nutrition!)

Just to underline how fit he is: from 2010, he spent 5 years solo-planting a native woodland of 20,000 little trees on 37 acres around our house, and has been tending this little wood ever since. He’ll be 68 in January. We never take this good fortune for granted, though!

Wishing you lots of luck…hope you’ll keep us posted 💞

[jackdup in reply to Barnclown]

Thank you for the additional information, it is very much appreciated. I know we are all unique and while I am sure many aspects of Crohns is common to most there is always symptoms that are individual as well and they differ from person to person, but always good to hear other’s experiences.

[Barnclown in reply to jackdup]

You’re very welcome! If I’ve learned anything in 69 years of these sort of illnesses: yes, that’s totally true…& pretty much true for all inflammatory autoimmune & immune dysfunction conditions, eg Lupus, Vasculitis etc. Which can make for loneliness in patients, but we can still find solidarity in sharing details of our versions of these conditions. Sharing always feels somewhat redeeming… helps me feel maybe there’s something positive in all this.

[jackdup in reply to Barnclown]

I’ll try to remember to post after I have my surgery to let you know how things go.

[Barnclown in reply to jackdup]

👍, but no pressure! That’s the last thing any of us need any more of 😉💞

[jackdup in reply to Barnclown]

No, no pressure, thanks

[jackdup in reply to Barnclown]

So I had my surgery on Dec 12 and was in hospital until Dec 20. The surgery went very well but also ended up with mild pneumonia. I have been home now for a week and am very tired and not to really do anything. I believe they removed about 10-12” of my small intestine (terminal ileum) and the part of the large intestine that connects to the small intestine, the valve and my appendix. My appetite is pretty good and have been eating three meals a day. Continue to lose weight since surgery. Not sure if that is normal but am hoping it stabilizes soon.

[Barnclown in reply to jackdup]

Thanks! Am relieved it’s going pretty well all things considered! That’s really good news you’ve got an appetite & are eating. But am sorry about the pneumonia …my feeling is, you’re bound to be very tired & need to go gently for a while. Hope your weight stabilises soon. That’s a big op you’ve had! Well Done!

[jackdup in reply to Barnclown]

Thank you

[Barnclown in reply to jackdup]

💞

[AAC1818]

hi! I had a colectomy and had to have a temporary. Ileostomy and bag. The recovery wasn’t easy especially because I also had peritonitis before this and after. But after this plus being on entyvio infusions every 8 weeks. I have virtually no Crohns symptoms and am in remission. In hindsight I waited too long to start on infusions and to get this surgery. I strongly suggest don’t wait until you are repeatedly or constantly septic. My life is so much better. Much love, Allison

[jackdup in reply to AAC1818]

Thanks for replying and appreciate the information. It is great to hear that after some tough going through recovery you are finally in remission and free if symptoms ad that really is the goal.

All the best and thanks again.

[Newark53]

I had 2 feet of bowel removed 13 years ago this week, which was due to a colovesical fistula as, due to diverticulitis, my bowel had attached itself to my bladder which is not a very pleasant condition at all! The operation went very smoothly (they also removed my appendix for good measure). This allowed my bladder to heal itself and for the first couple of years it was nice to be normal again other than having to go to the toilet more frequently and being rather loose. Unfortunately after about 3 years I developed an incisional hernia which became too uncomfortable and painful to ignore and the operation to cure that caused many more problems than the resection. That did eventually get resolved and this year regrettably I have developed colitis but that is now under control thanks to Mesalazine. Despite all that I was pleased I had the original op as it did cure a condition which could eventually have killed me, so although the consequences of the operation may not be so good they’re much better than the consequences of the condition!

[jackdup in reply to Newark53]

Thank you very much for the reply. Do you mind if I ask if it was the large or small intestine that part of wax removed? Do you know if they removed the ileocecal valve and if so what affect they had? I too have a fistula but mine is from the small intestine to the large intestine so it bypasses the strictured area of the small intestine. Sorry to hear if the complications that developed but glad you are finally at a place where everything things seem to be not too bad.

Thanks again for your reply.

[Newark53]

Hi, it was part of the large colon (I think it’s called the Sigmoid colon) and no valves were affected so afraid I can’t help you there. If you do have the resection i do hope it goes OK. My complications were unfortunate but they don’t happen every time!

[jackdup in reply to Newark53]

thank you