Since getting an ileostomy, I have found that there are a lot of things that are different. My wife and I used to horseplay a lot before getting this, so one night we were horseplaying and she lifted me off the ground from behind (right around the ileostomy). I happened to be brushing my teeth at the same time and I couldn't tell her that it was a bad idea. All I could do to try and protect it was to bear down and just try my best to stay on the ground. I was not successful and I ended up in the air. She put me down immediately when she realized how bad of a decision that was. Flash forward to almost a year later, and I am still in debilitating pain. My GI, primary care, and the surgeon who did my initial ileostomy surgery are at a loss as to why I am in pain and have done as much as they can for pain. I have had several ER visits and my last visit to the ER resulted in me taking Lyrica. Taking Lyrica to test a theory I shared with my GI and an ER doc, which was to test to see if I was dealing with nerve pain. At first, this worked like a miracle I had been waiting for. This was, however, short-lived. I am now taking 150mg of Lyrica (3x a day) only for it to not be working for more than 10 minutes, then it's back to debilitating pain that has me crying all day and night. I have referrals for acupuncture and a few other referrals. Ultimately, I have been left to do research and try to find some answers on my own. I am coming here hoping that maybe someone would have some theories. To describe the best way I can what I am dealing with: it feels like my stoma is a knife holder and that a knife is in it. My ileostomy is on the right side of my stomach. I have debilitating pain also piercing through the upper right quadrant a few inches away from the stoma. I have been wearing a hernia belt since the injury. I use heat and ice packs all throughout the day. Car rides are extremely hard as well as just about everything else. Talking too loud hurts, breathing deep hurts. Expanding my diaphragm at all is excruciating. As a singer, I have still been able to sing but not at full capacity. Not able to professionally record at the moment. I have expressed to my doctor that the Lyrica is proving ineffective and I am still waiting on a response. I am not the giving up type; I need some answers.
I can imagine the pain. Welcome to your new friends.
Tell the wife to lay off the steroids.
Just kidding.
Horseplay is fun. Just gotta be more careful.
Did you have any scans done? CAT? MRI? Etc.
Just offhand, could it be a cracked rib? Pulled groin? You got your research cut out for you. The scans might show something.
Taking that medicine clearly isn't helping. You tried the nerve route... what about the muscle route? Muscle relaxers?
When a muscle tightens in my shoulder, it brings me to tears. It locks up. Heat and ice help a little. But IBD really screws up the body in many ways. Don't overlook that fact.
Blessings. Help or advice is on the way.
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Good Evening Bob and All,
I checked my email and saw new postings. That's when I usually visit the site. I've recently met a few others who have developed UC and have made contact with them. I've directed them to this site. I also use the site to look up concerns they or I have. This site has been unusually helpful to me. I have seen questions and concerns of others posted. After I scroll down and see similar comments that I would make, I don't comment. As for social media interest, I have a Facebook account (due to work). As of this date, I have one Facebook Friend (and don't even know how that happened). I find the content here more relevant to my life. Then again, I'm old school. If I want to see how a friend is doing I just make a call.
Stay Safe and Sane all. Back to the hockey game,
SharkFan
Have you had your gallbladder checked out? Also, have you had a CT of the area where the pain is? I have been having abdominal pain for several months now, and they have determined through tests that my gallbladder is dysfunctional and I have 3 hernias along where they did the incision to remove my colon and place my ileostomy. For me, it was determined that these two things are the reasons for my pain.
Lee
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Thank you so much for your comment. I wasn't sure if this was a real thing. Good to know it's real 🙌🏼. I have had X-rays, CAT scans, and MRIs. They have shown no abnormalities. Yes, I agree the medication route did not work out. I have been referred to a muscle specialist (forgot the correct name for it). I have been taking Flexeril, and that does nothing for the pain either. Definitely needs some deep exploration.
I just wish I had at least 30 minutes a day of relief. My Crohn's is under control, which is something they blamed for the pain early on.
Would the gallbladder be visible on the CAT scan? If so, I believe all my organs have been ruled out as the problem.
Living with Your Ostomy | Hollister
Hi Fly,
Sounds like you have some peripheral nerve damage/neuropathy going on. Your gastro and surgeon can't help you with that... you'll need to see a surgeon who specializes in peripheral nerve damage repair. I really don't know anything more about it, so can't make any specific recommendations... other than make sure you get at least 3 opinions before you take any action. You usually only get one shot with nerve repairs... so make it count!
;O)
Hi Fly, you didn't say if when you have output there is pain, although it sounds like it's constant. What I'm getting at is internal scar tissue or adhesions that a person gets after surgery, also caused by Crohn's.
It isn't done in a typical CT. There is a special injection they have to give you and also something you have to drink. The injection moves through your body in such a way it makes you feel like you have to pee or are peeing, but you aren't. It is just an effect of the injection.
Lee
Yes, the pain is constant. The pain does seem to intensify with output, though.
That's exactly where my research has brought me to. Seems like an even longer road to healing is ahead. Just trying to stay strong for the journey. It has been a tough year dealing with this. I just need my doctors to catch up in getting me the right referrals. I feel like I have to go through the motions with trying acupuncture. I have had it before to try and help with Crohn's before I had the ileostomy surgery. It didn't help that much then. I have a little faith that it may help. I'm just not ready to have that wiped-out feeling along with being in pain still.
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It sounds like the CAT scan with contrast. I have had that as well as a couple of MRIs.
Sorry to read about your pain trouble. Pain just wears us down. I tend to think it's a nerve issue. I'm thinking somehow a nerve was damaged when you were picked up. Nerves take a long time to heal, if ever. I hate to say that.
I had throat surgery in 1983. A sensitive nerve was touched in my neck. My left vocal cord has been paralyzed ever since. Seek out nerve specialist doctors. Get 2 second opinions. If it is nerve-related, there might be a way to electronically stimulate it to stop transmitting pain signals or surgery might be indicated.