Post-Ileostomy Complications: Seeking Advice and Support

Good morning.

My husband is 5 weeks post ileostomy. In the last few weeks, he has had nothing but problems. Last week we ended up in the ER as he had a complete blockage. The doctor did emergency surgery to release the fascia around his ileostomy (it was very tight and was the cause of the blockage). He also had to "resect" the ileostomy as the original tissue was no longer viable. We came home from that, and he had been doing pretty well other than pain from the operation. Last night he started in with the terrible abdominal pain again. Stoma is passing gas but not much else, and I am terrified. He is very fed up with all of this and just wants to start feeling better. Has anyone had issues like this? He will be having a reversal that can't come soon enough in my opinion. This has all been a nightmare....

I am afraid I cannot relate firsthand experience for you other than to ask what sort of diet he is on. At 5 weeks, given all the problems you have reported, I assume he is still on a clear liquid diet? I wasn't allowed solid food until almost 4 months post colectomy. But, my issues were quite different from what you describe.

Daniel

Push fluids and chew way more than you think is necessary

If his pain started last night and is still happening, without any output, he probably should be seen by a doctor. I would get him to the ER. A blockage can be serious as you have already found out. Let us know how things turn out and good luck.

Terry

Hi there,

I want to encourage you and your husband during this hard time. I know it's beyond frustrating, hard, and not what you expected. I am on my sixth stoma in a year and a half, and the last 3 were within 3-4 months.

Please continue to have hope and hang in there and don't give up the fight, I will pray for you and your husband. There's always light at the end of the tunnel even when we can't see it.

 

Hello,

If possible, see another doctor and a stoma nurse. Get a second opinion.

Have your husband fast for a day or two and drink a lot of liquids. Plain water coupled with an electrolyte beverage like Gatorade (available on Amazon) is best. Always sip, never chug. Can also get protein/vitamin shakes like Ensure Enlive to get calories and nutrition while fasting. If pain persists after fasting, something is wrong.

You didn't mention why your husband had an ileo put in. Underlying disease could be a factor.

Hope he gets better.

 

Well, we did end up going to the ER and it was yet another blockage. The surgeons decided that the best thing to do was to reverse the ileostomy. When they got inside, (laparoscopically) my husband had developed an abscess on the left side of his ileostomy. He also had tons of adhesions that they had to break down, along with removing his appendix as it was all knotted up in the mess. He spent 4 days in the hospital and is home now. I wish that I could say that everything is sunshine and roses, but it's not. He continues to have abdominal pain that is quite severe at times. He is using the restroom, but still seems very sore. I am chalking this up to the fact that he has had 3 major abdominal surgeries in the past 8 weeks. I think that one week to be pain-free is a BIG ask after all of that. Understandably, he is frustrated and we are both exhausted. Here's hoping that things get better.

Thanks for the update, but sorry to hear how things have turned out. I imagine he can expect to be experiencing pain off and on for some time to come. That is a lot to go through in a short time. He's lucky to have you to take such good care of him.

Terry