Multiple bowel surgeries

[KAWW]

I have had 7 abdominal surgeries, three of which are bowel. I am having my 4th bowel surgery on February 26...next week. This time for ileostomy revision and removal of adhesions that are causing obstructive strictures. I know there will always be another bowel surgery in my future. If this is your situation as well please let me know how you are dealing with it. I am becoming less inclined to continue this repetative cycle. I am tired of being cut open and hospitalizations.

[ron in mich.]

Hi Kaww I,ve had 3 surgeries for an ileo. the first was for u.c. 34yrs. ago, then I had emer. surgery a year and a half later do to adhesions causing a full blockage and my last was last april due to crohns causing inflammation and blockage, my stoma was moved from right side to left, I hope its my last.

[Snowgoose]

KAWW,

I feel for you as I too have had many abdominal surgeries. At one point my surgeon said, "Twelve surgeries for blockages is enough. Time for the colostomy". I have had several temporary colostomies over the years so his suggestion was not a surprise, in fact, it was welcomed. That was eight years ago and it not only saved my life, it has also restored my health. Been a happy camper ever since.

Good luck to you.

[poucher]

I had four resections for Crohn's. The cycle ended when I began Humira. I hope you find relief, and avoid future surgeries. Sending hopeful thoughts.

[KAWW]

My stoma revision went well in February. Surgeon did not have to open me up this time, working through the stoma. I was grateful 70/30 for open abdomen. . I had problems maintaining level of consciousness due to my autonomic dysfunction which was scary.
Unfortunately I developed an ileus for 3 weeks. June 6 to June 26. It has been absent for 3 days now. I am keeping my fingers crossed. I made the mistake of eating corn on the cob causing a partial obstruction and my bowel shut down.
My new stoma is completely retracted now..again. I will not have another surgery until my life is in jeopardy.

[JerryNYC]

Hello Kaww, I had 3 bowel surgeries: first was in 1963 for colectomy and ileostomy for ulcerative colitis; second was in 1979 when I had developed a parastomal hernia, which was repaired and stoma was moved from right side of abdomen to left side; in 1980, I developed severed intestinal blockage (volvulus) and was seriously sick. During surgery to correct this blockage, stoma was moved back to right side. Over years, I have developed severe cramps from (presumably) intestinal adhesions. These seem to be focused on the ileum as it passes out through the abdominal wall. Interestingly, last year my gastroenterologist did an ileoscopy through the stoma and I had severe pain as the ileoscope went in, with spasms extending throughout my abdomen. He explained that this was not normally supposed to happen, since the interior (mucosa) of the ileum has no pain receptors. He said that what likely was happening was that when the ileoscope stretched the ileum, it pulled on all of the adhesions attached to the ileum. I've spoken to several surgeons about surgery to remove the adhesions (adhesolysis) but they all strongly recommended against it because they said the the adhesions would soon form again. But the pain and ongoing cramps is affecting my life. Could you let me know about your results after removal of adhesions?... although they may not have yet formed again - and for your sake, I hope they don't. (Although, as you told us, in February, they operated through the stoma - so thel likey were not able to deal with adhesions, which are attached to the outside layer (serosa) of the small intestine. Ain't we all having fun?

[KAWW]

I also had a volvulus in my colon which led to my first surgery. 9 weeks after that my small bowel obstructed leading to my second surgery. Recovery after these 2 surgeries was challenging and the most difficult recovery I have had to endure...to date of course. 2 years later a closed ileosigmoid anastomosis stricture with removal of adhesions.. a 6 hour surgery due to adhesion removal. I recieved an ileostomy during that surgery.
A year later this stromal revision. 5 months later and my stoma is recessed, soon to disappear. My surgeon said some people develop adhesions and some don't. This last partial obstruction and mild ileus made me realize how careful I need to be. Likely narrowed lumen due to serosa adhesions as the culprit. I am taking meloxicam after I asked my pcp about a drug to decrease stricture formation. It hurts my stomach lining so I cannot take it every day. I will let you know any further developments.. pun intended.

[JerryNYC]

KAWW, Thank you for sharing. It is comforting to know that each of us is not the only one with such problems - and we need to keep going and supporting one another. One of the issues I have been told by the radiology people is that adhesions cannot be seen by any type of current imaging. They can be assumed by patient history and symptoms but can only be positively identified by open surgery and by (I'm not yet ready for this) autopsy. I presume then that you weren't "opened up" for a surgeon to actually see adhesions. What I am really interested in is to find patients who may have had adhesions cut during open surgery and how well they did afterwards. When surgeons say that the adhesions will eventually come back, I don't know if that means days, weeks, months, or years?
Jerry

[KAWW]

Hi Jerry. The surgery I had on January 23, 2018 showed I was full of adhesions. The bowel was stuck to my abdominal incision scar and was pretty much everything else had been effected by structures. My bladder is not draining completely either due to them. Many were adhered to my abdominal wall. She had to peel those off surgically. She said she removed those she could safely do so...That internal burning was the most painful part postoperatively. Pain control was insufficient due to push to decrease opioid use. I suffered for 12 days.. it felt like I had been burned with a hot poker inside.l could feel the fluid in my abdomen
I.drew mapping of the pain channels. A year later no stoma with abd pain. 70/30 chance I would have to be field dressed again. The surgeon was able to remove scar tissue around stoma and had just enough to pull out a 1 inch stoma. My gut is hypersensatieive now. She said she will have to open me up next surgery. Constantly changing structures and adhesions do not allow for a stable abdomen. I made an initial meeting of care at VUMC. Soonest opening is Sept 22. I hope I make it.
Karen

[JerryNYC]

Hello Karen.
I note that you had a colostomy, which is quite different from the ileostomy that I had for ulcerative colitis. But any of these surgeries will be followed by scar tissue formation and these scar tissue formations of adhesions will cause pain. My own feeling, based on my own experiences, is that most of the "action" will happen at the point where the bowel (whether it be colon or ileum) passes through the abdominal wall. This is the area where the main incisions and sutures will lead to scar tissue. If I ever have a "revival performance", I will try to have my new stoma outlet on the other side of my abdomen so that it doesn't take place on the battlefield of my 3 previous surgeries. Is that feasible for you?
Jerry

[KAWW]

Hey Jerry. I do have an ileostomy. Never colostomy. Sorry for the misunderstanding. My bowel pulls in the stoma with peristalsis which then causes leaks. No give due to scar tissue. Any suggestions on devices?

[steiconi]

I had adhesions removed in 2015, and haven't had a blockage since. Knock wood.
Doc didn't say they would return, but I wouldn't be surprised if they did.

I've had 10 surgeries in the last 15 years, 5 of them intestinal.

The last one, a year ago, was particularly difficult, with bleeding wounds, sepsis, and drains for 5 months.
I can't do it again, so I'm having as much fun as possible.
Who wants to be in front on the log ride?
Who wants to take the biggest slide in the water park?
Who wants to move to a strange city?
Me!

[JerryNYC]

Hi Steiconi, I have been warned off by a few GI doctors and surgeons not to have adhesions removed because (they claimed) new adhesions will develop pretty quickly. so I am pleased to see that this wasn't the case with you. Did the surgeon tell you that he/she was doing something different that would avoid new formation of adhesions? Or is it maybe just that some people don't form scar tissue so easily. What I would give to go to sleep and then wake up pain-free with all the adhesions gone!

[steiconi]

We never discussed the possibility of more adhesions.

[KAWW]

Adhesions forming as I speak. Cycle that never ends.