Chronic Pressure and Pain Behind the Ileostomy

Hi everybody,

I am Maren from Germany. I suffer from a huge problem that takes my quality of life and my sleep every day, I am so done.

Does anybody have physical problems concerning the ileostomy like chronic pain, pressure, and so on?
I have chronic pain and enormous pressure behind the ileostomy.
But it is okay, there is nothing wrong with it.

Another question:
Is there anybody with much pressure behind the ileostomy?
We created a new ileostomy but this symptom does not stop. :-(((

It is trapped gas but local behind the ileostomy exit.
Nothing helps and I am so sad because here in Germany I have never heard of it. All patients with motility disorders that I know do not have such a problem.
It comes every day and it is so hard to live with it.

Does somebody know or have this issue?
I am not speaking about the "normal" pain or trapped gas in the intestine. This is also a problem, but I am talking about this horrible local pressure.

Thanks a lot!
Best wishes
Maren

Hi Maren,

I'm really sorry to hear about the challenges you're facing. You're definitely in the right place to find support and advice from a large community of people who understand what you're going through.

Regarding the pressure and pain you're experiencing, it sounds incredibly tough. While I haven't had the exact same issue, I've heard from others that sometimes adjusting the type of appliance or trying different dietary changes can help alleviate some pressure. It might also be worth discussing with a specialist who has experience with complex cases like yours. Sometimes, even small changes can make a big difference.

Joining this website was one of the best decisions I made. The support and shared experiences here have truly changed my life. I hope you find the same comfort and solutions here that I have.

Hello Maren.

I don’t have an ileostomy but a colostomy, However, I have occasionally suffered with similar symptoms to the ones you described and it can be very painful and uncomfortable.
After much deliberation and poking about I came to the conclusion that I had a peristomal hernia ( just inside the stoma outlet) which was completely blocking the exit and creating a build-up of gas. What I found was most beneficial for preventing this was to use the coloplast stoma plugs (not so much for stopping faecal output as they are useless for that, but they can keep the hole open and because they are porous, they let the gas pass through the device rather than having to force its way past the hernia. 
For me, it’s all about experimenting with different things and techniques until I find something that works for me.
I do hope you find a solution soon

      Best wishes

Bill

Hi Maren, if what you are referring to is pressure from gas, the only real way to avoid it is to not eat foods that cause gas. I have a problem with pain behind my stoma too, from gas. I do take a pill after I eat something that I know is gas-causing, but it doesn't always work perfectly. The gas eventually makes its way out, but it's just the price I pay for eating foods I really like sometimes! One way I've found to relieve the gas if it is really bad, is to lie down and relax, use your fingers to press gently around your stoma, and this usually will dislodge the gas after a few minutes. I'll usually drink some water before lying down, just to get things moving a bit and help push the gas out. The anti-gas pills I buy here are not going to be the same as in Germany, I'm sure, but the pharmacist should be able to recommend one for you. They are not expensive and don't require a prescription. Are you aware of what foods to eat to avoid gas?

Terry