Hey there. First time posting. Wanted to hear some feedback from some of you folks. Sorry if this is so long, but something is off and was hoping someone else was in the same boat or know someone who was.
Back in 2002 I had my colon removed and a j pouch installed after battling UC. Shortly after, I started battling pouchitous. Back then there were not many options to treat pouchitious, so I have been on a small amount of Cipro (250 MG) daily for probably 20 years. Zero issues, every few years I would get a some sort of diarrhea where I might go on Flagyl for a week, and it would go away and back to normal. Depending on what I would eat/drink some days would be worse than others, but for the most part no pain besides gas and bloating.
Around Christmas in 2020, I had a random DVT pop up. Nobody had any idea where it came from, but everyone and their mother wanted to blame Cipro. The hematologist said this could also come from GI issues, so they wanted me to come off the Cipro and get an upper and lower scan. Since I normally just saw a surgeon about my pouch, they wanted me to see a new GI doc. Got a new doc and they put me on VSL#3 DS until I could get the scope (it was over 3 months until I come off my initial blood thinners) so I could not do this for a while. In these 3 months I was miserable, cramping and bathroom accidents often. When I went into the scope, he said it was one of the most inflamed he has ever seen and wanted me to go back to a bag. At this point I went back to the surgeon that I have been seeing for a long time. For reference I was only on the blood thinners for 7 months until the DVT was gone. I have not been back on it since.
The surgeon suggested a new person that he works with that has some new treatments and maybe we can stay off the Cipro. I wanted to stay on the Cipro, if it isn’t broke, don’t fix it. But I get what they are saying that you can become Immune to it, and that would be bad for me if something bad happened. The new GI doctor put me on Mesalamine suppositories. For the most part these have been very helpful, my poop has been more solid than ever and very few accidents. I have been on it for maintenance, been taking it 3 times a week. As much as I used this and I liked the new features, I felt like it would give me stomach cramps and I felt like if I took it without any symptoms, it made me have problems urinating. I went to a urologist, and they could not find anything. No UTI, STD, nothing. This was going on for 2 years. Nobody can find a reason why I was getting this pain. They did a CT scan on me, and they saw there was inflammation on the dome of the bladder and since it was touching the intestine, it seems like it was inflamed. Nobody knows what came first, but I keep feeling that the Mesalamine is causing this. Has anyone ever used the rectal version of Mesalamine? If so, have you run into issues? Again, I like the more solid poops and less accidents, but I feel like it is causing side effects.
Now yesterday I did another scope, and the pouch was really inflamed. The anus was amazing, my guess it is from the Mesalamine? They did a biopsy and I am waiting on the results, but either way I am asking the doctor to go back on Cipro daily. I think I read some of you use this daily or a combo of meds, and you are still going well? When I went in yesterday, I was really surprised how inflamed it was. I have zero pain and things have been going well for months. Also, when we did the CT scan in December, it showed zero inflammation in the pouch. I also had another CT done in December of 2022, and again zero inflammation in the pouch. Two CT scans showing nothing and feel great (besides the urination issue) for months and this comes up like this? Has anyone had severe inflammation and have zero pain? Something is not adding up. They are looking into maybe I have Crohn’s and maybe that is why the inflammation was so bad? But I cannot lose weight recently (44 years old) and never had any cramps. I am puzzled by all of this.
Sorry, this is so long, but I am starting to get a little worried I might lose the pouch. Again, I am hoping they allow me to go back on Cipro, since I was fine before I was taken off it. Just trying to have a little piece of mind, hopefully someone can give feedback or has been in this situation.
Thanks in advance.