Ok I tell you the story short: last octoberI developed itch around the anus, then at december I started to feel like I was losing something from the anus (mucus), and no pain at all. Then, in 2019, I had a long course of ciprofloxacine, 1 month, it helped very much because I began again to feel normal, I was super fit like I never were from months. Then, stopping the cipro, pouchitis come back again, but, this time, it arrived with anal pain. I slowly developed pain at the point that, in march, I had a visit from my surgeons. They said I have pouchitis and I have to take a longer course of ciproxin. I took ciproxin for 5 weeks, and again, I soon started to feel super, I was really really happy with my pouch, it began to work awesomely... Then after the 5 weeks, I had to take (according to the therapy) 1 week of vsl3, but, without positive effect, or even with negative, as I slowly begin to have diarrhea again. Then after this week I have to take Rifaximin, and again, no help at all. The worse part is that now I have again intense anal pain that I don't understand what is it. I find it difficult to sit. I find it difficult to walk. This make me really really depressed. I should take again ciproxin but I'm afraid this is becoming chronic. I'm trying potassium iodide, it seems to help the pouchitis but the pain, intense, and the itch, is still there.. I don't know what to do and my doctors are difficult to find.
Many patients with chronic pouchitis are treated with very long term courses of antibiotics. I believe once you start to take it for long duration its very hard to stay off them , and what I fear most is like steroid with UC sooner or later the treatment stops working for many. Post takedown I had a bout of pouchitis I just ate plenty bananas for 2 days and breads with butter and fasted for long hours. This was my way of staying off antibiotics and it more or less worked. If you're fine with taking them then its another thing.
I couldn't shake pouchitis until I started constantly taking vsl3. I would get off the antibiotics and sure enough the symptoms would return. It definitely sounds like you are having a reoccurance of pouchitis. One week of vsl3 is not going to do much when you have been on antibiotics. I know it's expensive and maybe another probiotic will help you.
Believe me when I say I would rather take my probiotics then be stuck on antibiotics all the time. I have had one possible issue of pouchitis since doing this but life is much better.
Ok but I feel intense spasm and pain when things arrive there Is this a fissure or an abscess for you ?
No, but when I have pouchitis I definitely have had feelings that didn't feel good and I certainly had weird spasms because things don't feel right. You might have more going on, but I never thought I had pouchitis until a doctor told me, I even had a scope because I was so worried.
Pouchlogic- Are you taking VSL # capsules or the powder that requires a prescription? I just upped my VSL intake to twice a day along with Cipro twice day hoping that I get some relief from pouchitis.
Powder, no prescription, I've been ordering it online. Although I am switching to Visbiome as it's actually more attainable right now. I've never actually been able to get a probiotic script filled at a pharmacy, they tell me to get it online...
Ike, have you tried a sitz basin to help ease the pain and itch? A sitz basin can be bought from a health equipment supply store, a drugstore, or from Amazon. Fill it with very warm tap water, place the basin on top of your toilet (lid up) and sit in the warm water for at least 10 minutes.The heat will encourage healthy blood circulation to that small area which will help you heal on the inside. You would know if you had a fissure: it feels like razor blades coming out.
Hi ikh. Hey just a thought, but could you have a fungal infection. I believe you said it started out as an itch then became pain. Maybe try an antifungal cream. Hope you find an answer soon.
I'm going through this right now. I had a scope and I have a tear in my rectum (the little part that is left for the reconnection) I'm on prednisone for a few weeks to help swelling and inflammation. The stitz baths do help. My best piece of advice is to go to the bathroom when you feel like it dont hold it in right now. It helps with the pain. I'm also taking a magnesium supplement, with multivitamin. I also am on a very clean diet. My surgeon and GI doctor said the pain will go away. I hope you find relief soon.
I ended up taking antibiotics all the time. I rotated 2 different ones as that was to make sure they kept working. I also took VSL #3 DS which Walgreens filled and my insurance paid for. That was before the other alternative to it came on the scene. I would have gone on-line if my insurance didn't pay as it was expensive. I made sure to take it and the antibiotics at least 3 hours apart. This is so the good bugs the VSL#3 DS made wouldn't get killed right away by the antibiotics. Have you tried getting them to obtain the DS, double stuff? That is considered medical food and got approved but the VSL #3 of less strength wasn't covered.
I had to start taking prescription pain medication before my surgery and it was increased after my surgery. My PCP prescribed it as GI's and surgeons don't prescribe past the prescription you come home from the hospital with. I'd had the surgeries open as well as had past abdominal surgery and my abdomen was full of adhesions.
Unfortunately my j-pouch failed and needed to be removed. The wonderful surgeon that removed it spent hours during the surgery working on those adhesions. I still have abdominal pain that required pain medication but it's over 50% less in milligrams than before it was removed.
If anyone reading this is considering getting the surgery I hope your surgeon does it laproscopically. This would have minimized the adhesions and therefore the related pain. If I had to do it over I would have found a surgeon that did them laproscopically.
could also be diet related. I get these pains with nuts, seeds, coconut or almond flour etc.