FAP, Interstitial Cystitis, and Desmoid Tumors - Seeking Experiences

I am wondering if anyone on this site that has FAP has also been diagnosed with Interstitial Cystitis. I would like to hear from anyone who has either FAP or Interstitial. You don't have to have both or either one to respond to my posting. Also, has anyone on this site had a Desmoid Tumor. I would really like to hear from anyone about any of the above.

I have an Ileostomy because of FAP. Also, I have Interstitial Cystitis (a rare bladder disease). Last Sept. 27, 2011, I had to have surgery because of a Desmoid Tumor and had to have my Ileostomy relocated to the other side of my stomach.

Sandy

Hi Sandy ~ My 22-year-old daughter was diagnosed with FAP when she was 16, and she's had an ileostomy since then. She's had one dermoid tumor (different than a desmoid) removed after her colectomy, and then a few months later a desmoid tumor removed. For the last few years, she's had a 5 cm by 6 cm desmoid tumor under her chest cavity; however, the doctors monitor its size twice a year and will avoid more surgeries unless this desmoid increases in size and becomes life-threatening. They've told me patients with FAP are prone to having desmoid tumors grow on scar tissue, and that's why they want to avoid more surgery which would create more scar tissue on which more desmoids could grow.

I have FAP. I had my Desmoid Tumour within 9 months of my ileostomy on my small bowel that was over 22 years ago. Because of it being on my bowel with blood vessels running through it, doctors said it was best to leave it alone and to avoid surgery in almost every case. It used to swell at times and cause a blockage. I went to the hospital then for them to keep a close eye on me, and I had/still do a CT scan every year. Then 3 years ago, it popped and perforated my small bowel, so I had to have an emergency jejunostomy stoma. I was lucky doctors didn't expect me to survive. Within months, I had 2 desmoid tumours on my small bowel. They were causing me a lot of problems, so last year I had Radiotherapy to treat them. At the moment, they are stable. Have you looked at FAP International Information Foundation? It's a quiet site but has some good information about FAP and desmoids.

Wow guys, that's shitty. So sorry. Hope somehow they can do better than let you suffer. xxxxxx

Thanks Mooza, Desmoids are a pain in the backside. There are a few drugs you can take to try and stop them from growing, but they can have the opposite effect as well. That's what caused mine to pop. It's a very difficult and dangerous surgery to remove them, and they almost always come back. Each time they are removed, they spread, so you end up worse off.

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

Wow, again! Just when you think things can't get worse. Hey, I always want all my scar tissue bandaged. It's really bad, too many operations. Arghhh! Not to mention a big hernia on the old stoma site and an even bigger one on the stoma. Let's not mention the nurses' strike, which has resulted in over 950 plus beds closed. Waiting for feet as well, so I do understand the problems. But yours seem to be quite unusual. Too much makes me angry and somehow humbled! xxxxxxxxx

My internist thinks I have interstitial cystitis, but apparently that cannot be confirmed by any test or anything. What do you know about it?

Hi there. I have interstitial cystitis, have had it for 15 years, and I'm due to have my bladder removed in Jan and have a urostomy made. If I can help you in any way, please just ask x

I was diagnosed with IC 3 years ago. I was diagnosed with FAP last September. I now have the BCIR and it has improved my IC by 60-70%.

I only formed one desmoid tumor out of the 10+ surgeries I had. It took my 4th abdominal surgery to get it, but it was right under the skin so even with blood vessels running through it, we cut that sucker out. I hated it, it itched so bad and stuck out like a fist.