Remicade, UTIs, surgery

If you've not been following my journey... UC/Crohn's/RVF diagnosed 2014, Colostomy 2016, colostomy relocation 2019, started getting UTIs 1 month after 2019 surgery and was on antibiotics almost constantly until...modified APR removing most of the Hartman's pouch and scraping the anus 2021. New recurrent UTIs started again in March 2022. Have taken 3 doses of antibiotics, 1 fourteen day bout of IV antibiotics and now having more testing. UTI is gone but hovering. It feels like it won't take much to come back.

Eurogynocologist performed cystoscopy. No new fistulas in bladder everything looked ok. They have done several urinalysis and discovered that they have to utilize a catheter for a clean catch . Regular catch shows blood, WBC, RBC, leukocytes. So fistula is draining very very frequently and causing the UTIs. (Even if they try "cleaning" the the area and then I go pee in the cup...it's contaminated.) Remicade and Methotrexate are also culpable regarding UTIs.

Eurogynocologist wants me to start estrogen vagina cream, Ellura cranberry supplements and D&Mannose. The cream is half a gram 3x a week, the other is daily. She is hesitant on the surgery to remove my anus and repair RVF...since I coded in 2 out of the last 3. Plus she doesn't know if it will definitely stop the UTIs. The regular fistula repair surgeon will not touch that RVF with my severe fistulizing Crohn's. My Colorectal surgeon wants to remove anus and sew up fistula.... But he said he could not guarantee that would stop UTIS and he is very hesitant to go in because of coding on him the last 2 times and the PG. I brought up stopping the Remicade for a bit but they all had hissy fits. I have delayed them to every 8 weeks because at 6 weeks I am miserable with UTIS.

I'm sitting on the toilet for hours daily because I feel like I have to pee all the time.

Any suggestions?.

Thanks all,
Clo

I want to pause the Remicade and Methotrexate because

1.) MX makes me really Ill for 48 hours a week. Sit in a dark room, ice on your head, popping zofran holding a puke bucket.

2.) The urogynecologist stated she thinks the 2 meds are lowering my immune system so much I can't recover from the UTIS.

3.)The infections are not responding to the antibiotics as well. Now we are using 2 or 3 at a time to clear the UTI. The IV antibiotics..... The infection was back 2 or 3 weeks after my last antibiotic infusion.

I feel as though... With every subsequent UTI... My body is struggling more and more. There's more pain. So I wondered if I got off the meds if my body would fight off the infection. I know that every other med out there will do the same thing--lower my immune system. So changing meds isn't going to help. I'm just starting to sorta panic. I'm afraid that the infection is going to become systemic.

Clo

I sympathize about UTIs — I know them and the pain too well. I go from zero to peeing blood in about 2 hrs. Crazy pain! So sorry. Mine were occurring about every 9 months. I started taking the cream and also raloxifene a while ago (a year maybe?) and haven’t had a UTI since. The raloxifene is a synthetic hormone. It can cause blood clots which is worrisome so I compromised on that but only taking it every other day. So far so good. Sounds like your drs plan is a good one. If it doesn’t work then I wouldn’t blame you for taking the risk of surgery. Enough is enough! Good luck. Wishing you better health clo!

You're in a very complicated situation...regarding the remi, what is the benefit to be delayed by 2 weeks?

Rest well...hugs,
q