Abdominal Pain and Swelling with Ileostomy - Seeking Advice!

Hi all,

I have an ileostomy and for a week now I've been having pain in my abdomen mostly on the right side. The pain is now traveling about and the area around and behind my stoma is swollen. I'm very aware after I've eaten of the food moving through my intestines which I've never felt before and I'm feeling a lot of pressure as if my insides are about to burst! I've had two blockages so I know what that feels like, this is different! Anybody experienced this? Ta!

Hi Marilyn.  I indicated "liked" because you shared with us.  I certainly don't like how you feel and now you need to share with your surgeon, WOCN or Primary Care Physician.  Please let us know how you make out.

Respectfully,

Mike

I'm surprised you're out of the hospital so soon. I agree with Mike above. See someone. Are you staying fluid? Lots of water? Hope it passes soon.

Hi Warrior,

I think you misunderstood, I've had my ileostomy for two years now and have had two full-blown blockages over that time, but these symptoms are different! I've had them for a week now! I'm having bloods done tomorrow morning to check for infection and if no infection, my GP will refer me to my surgeon! I just wondered if anyone had experience of my symptoms and what it turned out to be! Thank you for showing an interest, take care!

Hi @2marilyn2, just want to say I hope they find the problem and it will be a quick fix. Best wishes

Ya, I misunderstood, read it too quickly thinking it's only been a week or so. My bad. I have never experienced blockage, nor the feeling or something traveling throughout my small intestine. I consider myself lucky that way. Knock wood, I am living fairly easy. You really have to chew food and keep up water intake, I was told. And I do eat a lot of soft foods, which produce semi-solid output. I am about 3 years into my ileo. I am concerned about what you feel moving that might be gas, but you say you actually feel like it's food. That is very bizarre. Geez, what were the previous blockages? How did you get out of that situation? To me, a blockage would likely result in, say, a corn kernel not being chewed, or broccoli, or hard stem fruit/veggies, popcorn, even gummy bears might do it for me. I don't know. I stay away from the "don't do" foods because I simply don't experiment when things are going well for me. I guess a blockage is like being constipated, hard food getting stuck. Hmm. Let us know what the doctor says. Interesting thread. Thanks for sharing. Warrior

Hello Marilyn.  There have been times in the past when I have had similar symptoms to the ones you describe. They have been variously caused by blockages, wind and less than digested food. I tried all sorts of different remedies but the one that works best for me is Metamucil. Unfortunately, it is not available in the UK but my daughter ships it over from New Zealand for me. I believe you can get it on the internet. 

However, as with most things to do with stomas, every-body is different and what works for me, may not work for you.  The other word of caution is that very rarely, the gut gets twisted and causes a serious blockage; I think they call it a strangulated hernia. This needs to be treated immediately. Thus, with all these conditions, it is best to have  an expert diagnosis so that you know what your dealing with and can treat it accordingly.

I hope it all gets sorted soon.

Best wishes

Bill

I'm interested in your outcome. Good luck and hope you get sorted soon.

2Marylyn2. Hi! How are you feeling? I can relate to you, I've been going through pains myself and there are a couple that don't believe me! Why would I lie? I just went to my gastro, he said you need to talk to someone who's a surgeon and I will go see her soon! I must say I'm always in pain and not able to do much. I have a hernia behind the stoma, like many others. I'm sorry you have all this pain too. I'm going to keep you in my prayers... I know people don't understand our pains and things some of us go through... we're all different but like I said, some don't understand or believe me!! I'm here if you want to chat. Have a great day! Sincerely, Victoria

Hi Marilyn, I had pains similar to you before I had resection surgery and my stoma moved from right to left. If I had eaten a heavy meal, the pain would start behind my stoma and then radiate across my stomach. I would start drinking more fluids like green tea or juices and try to get it to move. When I had the surgery, they removed about a foot of small intestine and said it was reduced in size due to scar tissue from Crohn's disease. My old stoma was retracted from an inch sticking out to about a quarter inch, and the opening pulled to the right side skin level. Hope you get yours sorted out.

Ron, hi. I was wondering, do you have pain now? Mine is weird and it could be from gas and scar tissue. It's very scary to suffer in pain or uncomfortable feelings and pain. I also had 3 surgeries in 2017, 7 months. It was scar tissue strangling me (had Chinese food) and I had to have surgery. They moved my stoma and took 5 inches of small intestine. At that time, I didn't have pain. I got sick and started vomiting and had a fever, so I went to the ER. I'm praying that nothing like this ever happens again! I know I need to get a good doctor (my surgeon nicked my bowel, went septic, and ended up in the ICU) to keep me from so much pain and stress. It's not good; it makes it so much worse! It's awesome to hear that you had a stoma, wow! That's great! I know I need people who get it!! I'm sure you do. Also, I hope you're doing good and living a good life! That's good you're married (you have a great, caring, good-hearted wife!)

Hi Victoria, no I don't have pain anymore like I had before the resection surgery. The only discomfort I have is if I eat gassy foods like chili.

I guess I should say pain, it's uncomfortable. And it's gas for me, but I don't eat a lot of different stuff. And now I'm doing black coffee and smoothies and soup, and nothing like chili, omg, or salad or anything like that. I have to say I'm uncomfortable. They say it can be scar tissue, idk. Just pray to have good days and be ok! Sincerely, Victoria.

Hi Bill,

Thanks for replying! I contacted my stoma nurse who thought it wise to get checked by my GP. As I'm still having output, she is thinking it might be an infection! I had bloods taken this morning, hopefully get results tomorrow. I have had two full-blown blockages and had to be hospitalized. The second time, I was taken off a cruise ship to a hospital in Rhodes. That was scary, but I have to say I got very good care and was sorted out within four days! So knowing the pain that causes, I'm feeling this different. My stoma came about because of bad adhesions from a colon cancer op. I'm just hoping it's not the adhesions playing up again! We'll see, just have to work through it! You have been through the mill yourself I noticed, hope you are keeping well now! Cheers!

Hi Mike,

Thanks for your concern, I'm on it. GP is doing bloods, so far I'm avoiding the drama of hospitalization. Should get results of bloods tomorrow! Take care!

Hi Lovely,

Thanks for your good wishes, GP is on it! Take care!