Unusual Increase in Blockages

[Hoodor]

First time post, have had ileostomy since 2004 (for UC) and have averaged no more than one blockage per year in that time, and always have been able to trace them to excessive/risky eating.

In the past two weeks I’ve had 3, fortunately partial but still very uncomfortable and the first one lasted 25 hours. Since then I’ve been super careful with diet and everything seems to pass normally during the day, but I’ve had the two additional blockages of 5-7 hours in the night. Basically I will have waves of cramping with nothing passing except maybe a little fluid or air, until it finally resolves. This is eating apple sauce, white rice and boiled chicken and chewing well.

First GI appointment is 1/5/22, and in the meantime I’m not sure what to do.

Could scar tissue or something else develop after all these years of relatively problem-free functionality?

Thanks!

[ot dave]

Hello Hoodor,

I have a colostomy, so I have little experience with blockages as most of my plumbing is intact. As an occupational therapist, I get to deal with scar tissue a lot after hand surgeries. Scar tissue typically matures within about 12 months. So, scar tissue is not likely to be causing your issues. As an irrigator, I have run into issues with getting water into my colon, as if it were being blocked. I have found that my weight may be contributing to my "blockage". When I lose a few pounds, things "open" back up a bit for me... I must be sitting right around the threshold! Just something to think about. Hope you find a solution.

David

[ron in mich.]

Hi Hoodor i had the same experience as you although i had my ilieo. longer, but the obstructions started to be more frequent, and about 3yrs. ago i had to have resection surgery and some small bowel remove as scar tissue had all but closed it up.

[Hoodor]

Hi Hoodor i had the same experience as you although i had my ilieo. longer, but the obstructions started to be more frequent, and about 3yrs. ago i had to have resection surgery and some small bowel remove as scar tissue had all but closed it up.

Thanks for the response, Ron. How long had you had your ileostomy when this happened? Do they know why it happened?

[ron in mich.]

Hi Hoodor i had my ilieo. for about 30yrs. and the scarring was due to crohns

[susan f]

I had something similar after I had had my ostomy for about thirteen years. It turned out that instead of UC I had Crohn's disease, as there was inflammation, ulceration, fistulas, and strictures in the small bowel when they did the ileoscopy.

The good news was that I started on medication for the CD, which helped, but did not resolve the stricture. I wound up getting a resection which has solved the blockage problem.

While I had the stricture I was told to not eat more than 10 grams of fiber a day (I used a food logging app to track food and this helped me track fiber). I didn't have more blockages while I did that, but it was an awful lot of white bread and plain chicken for a year or so until I got the resection.

Hope this helps.

[hsiegal]

Hi Hoodor,
I am first time responder and user of this site. I have had my ostomy 23 years. I have had blockages due to parastomal hernias. I really don't want to be an alarmist but they can be dangerous. I have had to have numerous resections due these nasty hernias.

[Dijenga]

NOT saying this is the case, but I had two bowel resections in October.

My Ileostomy was in January of 2021. Have had several bouts with blockages that we were able to remedy with laxatives and diet.

First time, they went at the beginning of October and pretty much "roto rooted" a "constriction" in my small intestine. A little over two weeks later, back in the hospital with a total shut down. Dr. did a laparoscopic resection actually removing part of the small intestine . . . same spot where they had recently removed the constriction by removing tissue inside of the small intestine.

This time, they removed the section (as planned), THEN they thought, "hmm . . . maybe we should so some pathology on the removed portion of the small intestine. The constriction was cancer. My last chemo (because of all this, including the times when I was stopped up that they would not admit me) was September 13, 2021.

Advise them to check the obstructing tissue BEFORE they start cutting.

On November 24, 2021 they told me there was nothing they could do, then held me in hospital 2 days. One last visit to another provider trying to get a second opinion which happens Thursday.

Otherwise, it's just a waiting game.

Dijenga, the very yellow lemon man.

[Hoodor]

I had something similar after I had had my ostomy for about thirteen years. It turned out that instead of UC I had Crohn's disease, as there was inflammation, ulceration, fistulas, and strictures in the small bowel when they did the ileoscopy.

The good news was that I started on medication for the CD, which helped, but did not resolve the stricture. I wound up getting a resection which has solved the blockage problem.

While I had the stricture I was told to not eat more than 10 grams of fiber a day (I used a food logging app to track food and this helped me track fiber). I didn't have more blockages while I did that, but it was an awful lot of white bread and plain chicken for a year or so until I got the resection.

Hope this helps.

Thanks for your response, Susan. A couple of follow-up questions:

One, what other symptoms, if any, of Crohn’s were you experiencing other than the blockages?

Two, had they ever suspected Crohn’s (or ruled it out) prior to your ileostomy?

Thanks again, and to the others for their responses as well!

[susan f]

Yikes, I guess I haven't been here for a long time...

To answer your question (supposing its still of interest to you).

The other Crohn's symptoms I was having were little ulcerations on the stoma, a stiffening of the stoma (likely from all the scar tissue), and general fatigue. I had been tested for Crohn's multiple times when I had my JPouch, but it was never conclusive, and I did not opt for treatment at that time.