Has anyone had Granulomas on or around their stoma?

@klancee47

Hi, unfortunately, I can't speak of the MCS, as I don't have that. You will need to talk to an Rheumatologist about that or Immunologist about that connection.

Yes, I was diagnosed in late 2023 from an Immunologist with CVID. There are over 400 different types of different immune deficiencies/auto immune conditions. They do lots of tests and it takes awhile to get the diagnosis. With CVID- my antibodies aren't working properly, so they don't function well. I do infusions each week to get new antibodies from others. It has helped to reduce the number of infections I get each year. Did you see a Rheumatologist for your auto immune disorder- MCS? What are they doing about it? What are your symptoms with MCS? Your welcome!

@animallover25
Hi, I am wondering about the granulomas, I have heard of them but never thought that I might have them. Still don't know if I do. But I know I have MCS multiple chemical sensitivity.
I would like to know if you got a diagnosis for - CVID- Common Variable Immune Deficiency- I have never heard of it and wonder how it might be related to MCS multiple chemical sensitivity.
I struggle with all these auto immune deficiencies, I have just been diagnosed with it and he just called it auto immune deficiencies. Not a real cause just that my body was attacking itself.
I come here because I have a colostomy and I read about so much with it and then your post about other things that I had not even known about.
Thank you for sharing, I need to check into this also.

Yes, I have 4 of them. 2 of them are on my upper thighs and I can feel them when I touch on them. The other 2 are: spleen and my liver. I had a CT scan and they said they were benign. I would recommend getting a CT scan for it. The Pulmonologist is the Dr you need to see for it. Another Dr. you could see is a Rheumatologist, as granulomas can be connected to Auto Immune Diseases. I had a ultra sound done awhile back on the legs one and they said they were benign. Thank goodness! Does anyone here have an Immune Deficiency? I have CVID- Common Variable Immune Deficiency. My Immunologist says that some times my lung nodules can be associated with CVID and granulomas too. Just curious.... I don't think they typically do much with granulomas, unless they are causing pain. My Immunologist does want me to see a Genetics Dr. for the granuloma on my spleen.

I have not seen a surgeon. I'm seeing some slight improvement so decided to wait a bit. I will post if i do see the surgeon.

@patsyh, did you see a surgeon in the meantime? What did you decide to do?

I am pretty certain that I have granulomas on my stoma. Has anyone ever had them removed surgically? I am hesitant to do that but I was advised by a wound care nurse who specializes in ostomy care that was the best solution. I have yet to see my surgeon about it. They interfere somewhat with sizing the hole in the barrier accurately.

I thought I had allergies. Started with all size big bumps, then red/purple rings began on my back, back of legs, stomach, and now creeping down my lower legs. My torso has faded some after 4 years. I got light spots on upper arms, but that stopped progressing. My legs are getting progressively worse. It is a mess. I have insane itching attacks and use creams, but if that doesn't work I have Atarax for severe times. This stuff can go on for years or even forever. I wear long sleeves and long slacks to hide it.

The surgeon and nurse confirmed what they were but were not concerned about them. Told me if they got worse to let them know. Thanks for following up

Any update?

I haven’t yet. I’ve left two messages with the wound ostomy nurses but haven’t heard back. I meet with my surgeon on Monday and I’ll talk to him about them. I’m only guessing that’s what they are.