Post-op recovery (permanent ileostomy/completion proctectomy/jpouch removal)

Yes, you truly deserve a long, long break from pain and GI issues. If you had a successful stoma once, I don't see why you can't have it a second time - crossing my fingers the surgeon fixes things for you. Pretty obvious really, but if you are not happy with him for any reason, do seek a second opinion.

Already have an MRE (enterography) scheduled. Might have to do a small bowel follow through. Spoke with a different surgeon who is covering for mine. He said exactly what I have been thinking "Sounds like a mechanical issue. What else could it be?" He said if this is confirmed, they would have to wait a full three months from my jpouch removal to do any fix (because of too many adhesions he says, idk about that..).

I was told I had pretty much no adhesions abdominally when they went in. It really feels like a "kink" to me, but whatever it specifically is I'm looking forward to it being fixed.

ks1905 said...
When I had a kink they inserted a rubber tube/hose and left it in for a few days and it cleared itself. Pushed the tube out and the tube ended up in my ostomy bag.

That's interesting; I've never heard of that before.

I'm also a bit sceptical about the 3 month wait.

Solomon - Have you thought about TPN to get your weight up before surgery? Would your docs agree to it? It's a bit of a long shot but just thought I'd ask.

I am sorry you're having bad luck. It does sound like something that needs surgical correction. I really hope you're able to find answers with the MRE. It really stinks that you have to be uncomfortable for 3 months. I hope you're able to find an answer and move a little faster to get it corrected at least. It sounds like you're a great candidate since you didn't have adhesions in the past. Seems like, while this is the last thing you need right now, and it's inconvenient, you will get it fixed in the near future. I wish you weren't dealing with any problems. you've dealt with enough.

Hey guys,

Wow. What a week. Over a week ago I noted that I couldn't inset my index finger into my stoma and that the symptoms seemed very mechanically associated. I got an MRE on Tuesday and after badgering my surgeon into reading it the day after and finally getting in touch with me, we agreed that there was a real risk that the aperture of the fascial defect through which the stoma was extruded was simply to tight. I drove 15 hrs to Cleveland (that was really hard). Indeed it was very narrow and after a contrast study we proceeded to put me to sleep, do an ileoscopy which showed that it indeed was very narrow and the intestine going through the fascia was inflamed and ulcerated by what we think is ischemia (lack of blood flow to the area). The team does not suspect Crohn's because the inflammation was right where the narrow fascia is and the intestine behind it was "perfect." Nonetheless I will come back in 2 mo to make sure that things have healed. After the scope (while I was under anestesia) they proceeded with surgery to open the fascia more so that I can get normal outflow and that the intestine won't be strangled. They could have resected the sick intestine and pulled out a new stoma but they are confident that it was just ischemia and that with restored blood flow it will heal in a couple weeks. Immediately I experienced some relief of symptoms and very soon the endless gas stopped and the foul stool became odorless. My ileostomy is functioning like it did with my first stoma (very well) and I am now finally eating heartily.

Its' crazy that this happened but I guess my intestines were very swollen in the previous surgery from the darned Jpouch and apparently my abdominal wall is exceptionally strong and thick (lol generally that's supposed to be a good thing...).

While I feel traumatized by the possibility of anything going wrong (it seems like I haven't been able to catch a break) I hope and pray that this is truly it. That my issues are resolved. In any case I will come back to make sure that the strangled intestine has healed. Post-op care was a complete mess (I woke up with my bag half off and my abdomen covered in surgical fluid/ blood from the partially detached stoma wafer. Complete fail by the nurses. I had spoken with a stoma nurse previously about what to do if things went to plan and I had a wound around stoma. She gave me advice and supplies and I carried out the plan myself with no help available except my family. There were no replacement stoma supplies so I used my own. What Throat is sore from the tubes they put in during surgery seems. I am in pain from another abdominal surgery but feel like things are looking up.

What a week you have had. I'm glad you pushed to get your results and got things taken care of. We may not be doctors but we do know our bodies and we know when something isn't right.

I'm really surprised and disappointed in your post op care! Was that all at Cleveland Clinic? They should be embarrassed that you woke up that way and had no help.

Im really glad you already feel better and can eat!

How are you doing? Please update us. I am thinking about you.

I was just thinking about him too. Please update when you can Solomon.

Thanks for the update. I am happy you're feeling well and that things have improved. That's fantastic. I hope your follow up goes well.