Ileostomy Scar Tissue Pain - Seeking Advice

Hi all,

About 8 months ago, I (ilostomy '09, proctectomy '11) started having some intermittent, occasional pain to the right of my ostomy (about 1 to 1.5 inches from the stoma).

Saw GP who seemed to ask the right questions and said it was probably muscle related (ostomy working fine). I had had a particularly active few months ... so with my poor abdominal strength/muscles, his diagnosis seemed to fit.

Slowly got worse. Pain is worse (knife-like) and now hurts with any movement. Sitting or laying down ... no pain. When I press on the painful area, it hurts. If I continue to move around and do stuff ... the whole area gets sore to the point where pressing down (to click in a new pouch) hurts like the dickens. Wasn't like that 8 months ago.

Saw GP again last week ... he says it's most probably scar tissue ... which can develop and cause problems long after the surgery. And said there's not much you can do about it (except surgery once again in bad cases).

Anyone else suffering from this? Did you have any tests/procedures to confirm that it is indeed scar tissue causing the problem? How do we know there isn't another problem?

This is definitely cramping my style and activities. Seriously though, the pain level is something that I won't be able to deal with on a 'forever' basis. And I hate not being able to do stuff.

Any thoughts/suggestions appreciated.

Hi Beatrice,

You could try taking Vitamin E to help with the scar tissue (1000 IU/day), however, you should check with your doctor first as Vitamin E interacts with some medications.

Here's to a happy 'cramp-free' lifestyle.

Blessings.

P.S. If you decide to take Vitamin E, buy the natural one, i.e. d-alphatocopherol, not the synthetic 'dl' one.

Hi Tysatis,

Thanks for the suggestions. I've been taking 800 IU/day of Vitamin E since day 1 after my surgery. Actually, before ... we just upped the amount after the ileostomy.

Regards,
Rose

Hi, I also have an ileostomy (2008). After the initial surgery, the following year I had to undergo another surgery to repair multiple hernias and adhesions (scar tissue built up) which had cropped up due to our weakened abdominal muscle structure (if you can even call it that because I have no muscle strength anymore at all, so forget even trying to hold my stomach in to look thinner)!! So, because our surgeries were abdominal and very invasive, we tend to develop hernias and breed scar tissue or adhesions. Personally, mine weren't painful - only a nuisance since they would bulge out and I'd have to push them in. When I have had the pain you're talking about, I believe it's actually the small intestine twisting (at least in my case). This "could" lead to obstruction, but certainly not always. When I get these pains, I get myself into a warm/hot tub (yes, even with a stoma I take my pouch off) and listen to good music while soaking...massage my belly...and get out when it subsides. I also take Tylenol to help with the pain. Eventually, my pain subsides. Anyway, your doctor will only see if you have hernias - not adhesions until he gets in there. They did my surgery via laparoscopy and fixed everything, then inserted mesh from one side of my internal abdomen to the other side, so that it hopefully will help me to stop developing hernias again. Oh, and my main hernia that they found visually was in the exact same spot as yours is. You might want him to do more investigative tests - and then consider surgery. Keep in mind, though, that even if they fix the entire situation, us ostomates seem to continue to develop more down the road...it's one of the other crosses we bear. Best to you!

Thanks for all the info, GEL!

So if I understand you ... scar tissue doesn't show up on scans/etc? Darn!

Ok, I'll enjoy my holiday at the lake and then when I get back, go back to the doc for further discussion.

Makes me think that, as you say, the pain may be from the intestine itself - perhaps the scar tissue is pushing on it.

Again, many thanks!

How to Manage Emotions with LeeAnne Hayden | Hollister

Hi! ....Hey sweetie, it could be many things, but that pain is something that needs to be looked into a bit further and I am upset with your GI for not pursuing it more.....Sure, it could be scar tissue, but it could more likely be something else....It could be a hernia (I've had that happen twice in 35 years next to the stoma), but it also could be a little something else and I am surprised that your GI did not suggest taking a peek with a scope! I have had that done many times. They drug me into a sleep via IV meds, then just slip a scope into the stoma and feed it up until they reach the spot to get a good look. The procedure is no big deal at all and only takes them approximately 10-20 minutes. Then, after you wake up out of your grog, they let you know what they saw and go from there. Honey, keep pressing your GI to run some tests........I don't like to know that you are in pain .....You shouldn't be, sweetie. It will be okay xoxoxo

Thanks dear Doe!
Yes, I will get back to the doc and suggest referral to my GI specialist. But right now ... it's off to the lake for a couple of weeks. Lots of resting and I'll probably have to skip the hiking that we usually do.

Good ol' ileostomy ... the gift that keeps on giving. Just when you think you're done with the problems and have it all under control ... up crops a new little gem to give you a challenge.

Will check in when I get back.

Have a wonderful time at the lake, Beatrice! Xoxo.    You deserve time to relax and take it easy! ....Yes, please do check in when you come back, and I'm so happy to know you will follow up on this.    Whatever it is, it will be okay. I have had those problems exactly like you described, and they took care of it.  I am going to the lake as well. Take care, sweetie!

Hi Beatrice, my question is: are you still having the same amount of output from your ostomy? And if not, I would go to a GI specialist before it gets more serious. Good luck, Ron in Mich.

Hi, I too am pretty new to this ileostomy and protectomy. I had mine done on May 2, 2012, and my last hospital stay was Sept 1st (knock on wood). After finding out what caused me to go through this (2 GP/FPs) that ignored my symptoms for years, my suggestion is to either see your surgeon or your GI doc. I wish you luck and will pray that it isn't anything serious for you. Please let me know how it goes.

The proctectomy was the best thing I ever did. Finally, I can feel that there will be a painless (at least from my butt) life ahead of me.

We just got back from Hawaii. Traveling with an ileostomy/proctectomy is so much easier than traveling with bowel disease (pre-ostomy) or an ostomy/with intact ill rectum.

I can now relearn how my body functions and plan for things. Snorkeling trip for a couple of hours where there might not be a bathroom? ... very workable ... I know what to eat prior, what to bring. No problem, no pain.

Do I love my ostomy? No. Are there times when I think "wish I could go back to the UC days with no bag"? Yes. Does any of that make sense? Not really.

But it is what it is ... and I can deal with it.

For those who have had an ileostomy but still have a rectal stump ... if there are any issues of pain/discharge/blood ... please follow up with the best specialists you can.

Beatrice, I found your post of 7/12 extremely interesting. I had a total colectomy in 1985 and aside from the usual (occasional blockages) have not really had any pain associated with it. Until spring of 2012. My symptoms are exactly as you describe in your post. All my doctors are baffled. I even, disappointedly so, agreed to have a small bowel resection with a lysis done as my surgeon was convinced it was pain caused by adhesions. Well, I still have the pain.
In your Feb 2nd posting you sound fabulous. Is the difference the trip to Hawaii, if it is I'm booking, or did you discover what was causing the pain. Please, anyone's input would be appreciated.

I think it's possibly a hernia.
It goes without saying that none of us wanted the bag, but once you've accepted it if you've been restricted by IBD, then you have a new life.
So make the best of it (as you obviously do).
Without bragging (oh alright a little bit) I have traveled all over the world and will continue to do so. First ever sailing holiday to the British Virgin Islands in March! Whoopee!!

That's what the surgeon thought. However, after two CT scans, one surgery, and two doctors looking at test results, that has been ruled out. I have a referral to a back specialist as one doctor thought it may be pain referred from lumbar herniated discs. If not, I may be left with no other option than living with the pain.

We haven't definitively zeroed in on what is causing the pain.

But I believe it's a combo of issues: (1) scar tissue (2) minor food blockages (3) early hernia

Docs agree.

As long as I can stand the pain and can manage the episodes ... I won't have any investigative surgery.

Wishing you the best. So sad to hear that you still have the pain after surgery. That's exactly what is making me cautious.

Beatrice; You are right to be cautious. I wish I had never had the latest surgery. I am scheduled (in a few weeks) to see a pain specialist for a possible injection to control the pain. Say a prayer for me. I will keep you posted, if you like.

Yes, Merryberry - please keep me posted. Sending healing and positive thoughts your way.

All the best to you.

I was referred to a specialist in physiatry and interventional pain management. He said there are three nerves that supply the area where we are having our pain. He performed a nerve block to one of them and the relief was tremendous. The pain is not completely gone but it has diminished to the point that I can do what I want. Prior, the pain prevented me from doing some of the simplest tasks. The nerve block is uncomfortable but the entire procedure only takes about 20 minutes. Beatrice, I strongly encourage you to look into this procedure. How are you doing?

Hi Merryberry!

Thanks for thinking of me (and all who have this problem).

So glad the nerve block worked. I will definitely look into that if/when the pain gets to that point again.

Right now... who knows why, but I haven't had that level of pain for a long time.

Is the nerve block a one-time thing? Lasts for a long time?

All the best and continued good health.

Beatrice, I am so glad to hear you are not having the pain. I wonder why. Isn't life such a mystery? The nerve block can last 6-12 months for most, different for everyone. The procedure itself is mildly uncomfortable and takes only a few minutes.

There is a new material that really helps keep adhesions at bay -- I opted for it and cannot believe it is not mandated!! It is not like saran wrap but it protects like that and is put over the surgical area before closing the skin back.
Ewesful