Possible Hernia Symptoms with Ileostomy - Seeking Feedback

Aug 14, 2013 4:34 pm
I have an ostomy on my left lower abdomen. For the last year, I have been experiencing a burning sensation from the left hip bone to the left edge of the ostomy. No pain, but the burning at times is very uncomfortable. I have a nice-sized raised area underneath the sticky portion of my wafer, hence making the wafer on the left side pull away from my skin and having to change it. I seem to be changing it every day whereas before the 'hernia', I would change every 5-7 or 10 days. I have a GI appointment at Walter Reed/Bethesda on Aug 28th. I don't know if the doc will check it or the Enterostomal therapist I may be sent to. She's right there at the hospital also. Just wanted some feedback. I'm nervous about this as I had a hernia (stoma) many years ago...they tried to do a repair laparoscopically but because of all the adhesions, had to go in through my gut. I requested a zipper put in but didn't have the color I wanted!

Any info would be welcomed.
Aug 20, 2013 4:02 am
I am going to see the doctor tomorrow instead of the 28th.
With no replies, I am really happy that no one else has experienced this. It's not fun.
Take care.
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Aug 20, 2013 10:20 am

Let us know what the doctor concludes. You said your ostomy was on the left, but it was an ileostomy which is on your right side.

I do know that I've had a burning sensation in my stoma too, but not a raised lump.

Good luck,


Past Member
Aug 20, 2013 11:42 am
Have had a hernia when I had my colostomy and that was dealt with, and then a year later due to Crohn's and Colitis had an ileo, but thankfully never experienced further issues. As far as a burning sensation in the stoma, wonder if that is due to eating something irritating that area, or not changing the bag enough. I was told by an ostomy nurse to change every 3-4 days, and to me going as long as you have between changes is way over anything I ever heard of...most I have seen on any ostomy board is 7 days, and that is excessive.

I sure hope you find an answer and wish you the best on the 28th!! Make sure before you leave that if this is not addressed, they can refer you while you are there to have someone see what is going on as this is not the usual thing. No point in keep seeing different doctors when you are under a doctor's care on the 28th, so make sure you make that known going in, ok?
Aug 20, 2013 1:33 pm

First, my ileostomy is on the left side. Originally, my ostomy was on the right, but in 1979 when I had Toxic Megacolon, surgery was performed along with the removal of the rectum, resection, and the ostomy. When I woke up(!), it was on the left side.
It's not sure if it's something I've been eating as I've done the process of elimination to check that. As for the changing of the wafer and the pouch, I doubt that it's due to not changing too often. I've seen the Enterostomal Therapist (the same RN), and in the past, she was pleased with what she saw. She always checks when I go for my Dr.'s appointments. I go to Walter Reed/Bethesda, and I don't only see the same doc, but it's a team of them. I've been blessed because I've been with the same doc (who heads out the team since he also teaches) since 1986! That is highly unusual for a military hospital! Because I've been with him so long and he's done many surgeries on me, I trust him with my gut! And I should include my psyche!
I will let you know what takes place today after my appointment.
Thank you all for the advice!
P.S. The burning is from the hip bone TO the stoma, not under or in the stoma!

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Aug 20, 2013 9:26 pm

I have the same problem, stinging, burning from hip to stoma area. I also have my ileostomy on the left side, due to many hernia operations. I have had my ileostomy for 42 years. This is the first time I ever had this problem, it started last time I had a hernia operation in June of 2012. My doctor now is telling me that the pain is a nerve pain. She is putting me on Lyrica, I have not got my medicine yet, but I will post and let you know how it works. Sounds like we need to stay in touch with each other. I would love to talk to you more.

Aug 21, 2013 10:20 am
Well, went to see the doc at Walter Reed/Bethesda yesterday. One thing I'd like to say, "I wish dearly that they could spend ONE month in our shoes".
I don't very often have issues with my ostomy, so when they do occur, it's uncomfortable. I voiced all my concerns. The primary doc said it is a hernia, checked out the skin, sent me across the hall to see the ostomy RN, went and scheduled an MRI for next MON. Then went to have blood drawn. Busy day! The surgical team came in and looked at things and laid out HIS plan...."get the skin healed, have the MRI, and hold off on the hernia as I've had so many surgeries before hence scar tissue and the difficulty of the surgery could be".
That's what I meant by saying they should all do a month in our shoes! The skin won't heal as long as the bulge/dips are there to pull the skin from the wafer, duh! For the last week and a half, I've been very sedentary....walking slower than normal, no yard work, which is my love, sleeping in the recliner as lying flat causes leaks, the constant burning.....they don't get it! I can't continue this way. I'll do what they asked, resume my normal activities and go from there. I can't just crawl in a hole and vegetate!
I'm 63 now and have had my "Mary" since 1971. I've been pretty healthy, blessed compared to many, and I'm aware of that. I'm not throwin' in the towel yet!
Signed, FRUSTRATED....I'm fixin' to jump off my deck....(it's one step up from the ground!!!!!)
Aug 21, 2013 6:37 pm

Sounds like you are in the same boat as me, DR will not do surgery on me because he said that if I do not heal properly I would be in a nursing home. I feel the same way, I wish they would walk in my shoes just one day. It is sad that they treat us this way, I know the pain you are going through. When I get my Lyrica medication, I hope it will work. Hang in there, you will get better. I had my Ileostomy in 1971 also, at the age of 12. I remember the old days with the skin glue from Nu-Hope, them and Coloplast were the only ostomy supplies I can remember. Hope you get better soon. Have a good day.

Mark Strobel
Aug 21, 2013 7:16 pm

I had an ileostomy in 2009. Shortly after the surgery, I developed a stoma hernia. The hernia was eventually repaired; however, it recurred approximately one month after the hernia repair surgery. The hernia is painful at times. However, it does not appear to be obstructing stool flow yet. I've been attempting to manage the hernia bulge with diet and exercise with little success. Unfortunately, hernias only get worse. I will probably eventually require emergency surgery if and when the hernia obstructs the intestine. Unfortunately, I see little relief in another hernia repair if it is only going to last a month. Honestly, I do not know what to do.