Need advice on multiple stoma surgeries for granuloma removal

Hi guys, I'm 3 weeks out of the hospital for a stoma revision which removed the stenosis, but failed to give me a better stoma cos the 1st op was so bodged.
I had small granulomas before the revision, but the stitches aggravated it and it's so huge now, it's doubled in size in the last week and it bleeds loads, so I can't get on top of anemia, and it is really painful, plus the blood and the size of it makes bags not stick well.

The stoma nurse says my consultant says as the silver nitrate hasn't worked, I'll have to have more surgery to cut it out.

I'm at the end of my rope.. I've not had a chance to recover from the 1st major op (as I had septicemia, my consultant said it was the equivalent of being hit by a bus and the recovery will be the equivalent) or my latest stoma revision with 3 post-op infections... and now I have to wait for another surgery...

I only had my colostomy in May 2011, was in the hospital 2 months, then stoma revision on 27th Sept.
I have no resources left, physically or mentally.. my life is ruined and I just don't know how to cope.. I'm so desperate to recover and get a tiny bit of normality back.

Is it normal to have multiple surgeries on the stoma other than reversal, and has anyone had a granuloma cut off under general anesthetic? As I can't find one thing on it online, only silver nitrate.

Hugs, Bluebell x

Sorry to hear things went to poo on you, just remember you can always wipe poo off and still smile the next day because it's a new day. Look at the place where you can vent and people let you do it, so you feel good. I told my daughter when she feels that bad or upset to write a letter or email, say everything in big letters, then burn it or delete it. That way, no one can hold it against you later because they never saw what you wrote and destroyed.

Hi Bluebell, my heart goes out to you with so much suffering you have had to endure. I myself haven't had any granulomas, but have heard about people who have, and usually the silver nitrate does the job, but it seems in your case it hasn't. I know you must be so depleted and worn out from all your operations, and you're feeling beaten by it. That's natural from what you have been through. I myself have had a few stoma operations in the past to get things working again, but unlike you, I had time for my body to recover. However, there have been times when I have had things happen and I've been in a dilemma thinking I can't take much more. The body is a remarkable thing and can repair strength to cope with more if it has to. I know right now you probably don't think so... I really hope you get this sorted, even if it means more surgery. It may not seem so now, but you will get your life back. It's just going to take a little time. My prayers are with you. Good luck, Bluebell, for a speedy recovery. Take care, Ambies xx

Thank you, Ambies. What other surgeries have you had to have?
I do worry about how to recover atm as I already have severe M.E/CFS and arthritis and anemia, so my health is so bad anyway and I have nothing left in my tank x

Hi Bluebell, I've suffered with Crohn's, so my surgeries are mostly to do with that. But over the years, I've had three stoma revisions due to my bowel twisting. I've had post-surgery infections each time. I had my rectum taken out after I had an ileostomy, but I wasn't stitched, so that had to drain. But I kept having repeated infections one after another. I've had abscesses formed after each surgery. A few years later, I was struck down with more illness. My doctor thought my Crohn's had flared up, but it turned out my ovaries and womb were badly infected and had abscesses on each ovary. So I had surgery for that. I can tell you, I've been in a situation like you, having thought I can't take no more of this. My body was so depleted and energy levels were rock bottom, but somehow each time, I kept bouncing back. It takes time and a little faith. Each one of us has different problems with having ostomy surgery, and we all have different ways of dealing with it. In your case, you need time to recover. Sometimes it's not possible to have that time before another surgery is put upon you. Whatever happens, if it takes surgery to put things right, then believe me, there is light at the end of the tunnel. You will look back and think, "How did I do this?" I still have flashbacks. I hope you gather your strength for surgery if that's what it takes. My thoughts are with you. Take care, hugs, Ambies...xx

Aww, thank you. It sounds like you've been through utter hell with the Crohn's and all the ops. It does sound like a brutal illness. ((Hugs))... I hate the flashbacks too.

No problem, Bluebell. We all need to share problems. That's what we are here for. It was my pleasure to post back. Thank you for the hugs too. Take care, Ambies.

You're welcome.

Hello, I also have had two surgeries for granuloma, and I have been told some people keep getting them back. I have had the same problems as you and now seeing an ET nurse for the last month. I also have had a lot of bleeding and pain, and burning. This past week they applied a smaller appliance with a smaller ring size and it is the first time I am feeling relief. The nurse said I have mucus seeping from around the stoma which was getting on the skin and causing me lots of problems. I go back tomorrow and pray that things are healing for the first time. Good luck as I know the pain and problems from your situation. Regards, Joyce

Hi Hometown, oh God, two surgeries... what a nightmare. Let me know how you go. Hugs, Bluebell x

I had removal of granulomatous tissue at the bottom of my stoma 6 months after my colostomy. It has not healed and it has been a year ago last March. Irrigation is a no-no. I found an ostomy nurse who suggested putting a sliver of "silver" into the raw area and it seems to be helping some, plus I use a ring around the pouch opening covering the raw area, trying to keep as much stool, etc. away from it. They told me, however, it would take a long time to heal. I wish now I had not had them take the granulomatous tissue off but it was so painful. Good luck.

Oh ouchie.. That sounds so sore ;(. I am seeing my consultant in a couple of weeks and I'm going to ask if I can avoid surgery somehow.. I'm so not recovered from either of them.
I really hope your wound heals. Bluebell x

See if you can get stuff called Meda Honey. It works great on getting you to heal. I had many problems when I was healing, and this helped me with every open wound. I have to change it every day until you see improvement every day.

Hi Bluebell, sorry to read about your troubles. You deserve an excellent 2012 to make up for such bad times.

I have a couple of ideas for you.
Granulomas grow on moist flesh, with a bacterial load, and there is so much underlying tissue that the normal migration of the surface layer of cells to close a wound can't happen. I expect you know this, but I'm explaining for others that read the forum.

Last year, my wound granuloma at my stoma site (proud flesh) shrunk back after several applications of good old silver nitrate. It worked for me very well.
In primary care, we try a couple of different methods on non-stoma type wounds. Foam dressings work very well, and sometimes iodoflex works well. On a stoma, I guess the products would have to be applied under a barrier of some sort. Has your stoma nurse looked at these options?

Another bit of advice I can offer is to phone your local general hospital and ask to speak to the tissue viability nurse. There will be one there, and if she doesn't have the answer for you straight away, I am sure that she will find out for you once she understands your plight.
Hope that helps a bit.

One correction -- granulomas don't grow on wounds, they are from wounds and are the tissue that normally lies inside the skin!
Oops!

I had my colostomy in March of '09. Two months later, I began having burning and pain in the lower area of my stoma. The stoma opening is in the lower right corner of the stoma for some reason. So the surgeon decided it was granulomatous tissue, and he excised it. Ever since, I have had a raw area where he excised the tissue. Now it burns, hurts, and will bleed on occasion. The ostomy nurse finally had me apply a small piece of Aquacel on this area, then the powder and spray. It has never healed, and I am having more issues with it bleeding and being red raw-looking. Has anyone had a similar problem? I am going to call the ostomy nurse this week and tell her it has not helped and see what she recommends now. It is very uncomfortable, and with my opening located where it is, I see no way of keeping it dry so it can heal. I would appreciate any recommendations or remarks you may have. I am so tired of this pain and burning. Thanks.

I've just had granulomas removed from my stoma for the second time as the granulomas were bleeding a lot and ulcerated. I take Imodium to reduce output and spend all day with no bag on. Yes, it means I'm housebound but it's worth it to not be in pain from the granulomas and the fact that now they have been surgically removed. Silver nitrate does shrink mine but does not eradicate them and I get even more scar tissue. Once the Imodium wears off in the evening, I put the bag back on. Once this has healed, everything is fine for about a year. All responses have been really supportive and I found Coral's very informative.