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Hi All,

Thought I'd give you "bit" of background the help with context and just to introduce myself. I don't know another single person with a pouch (nor a ileostomy when I had one) so I'm grateful to find a large group with what appears to be a lot of collective experience. I love my surgeon/medical team but it's not the same and I've discovered more and more smaller academic centers like mine are doing fewer pouches (so have less of a patient reference base) due to effectiveness of biologics.

Any way my experience in summary:

UC dx ~2008 (distal dz, medication effective, went into "remission" and off all meds symptom free for >3 years.

Late 2019 Urgent/emergent subtotal colectomy after failure of all rescue medications, post-op ileus, 5 weeks in the hospital, home with end ileostomy

Able to get back to normal life for nearly a year with one hospitalization for SBO and then a UC flare in remaining rectal cuff requiring steroids for the last 6 months of that year, but overall felt very well with end ileo

J pouch formation late 2020: went home after expected 6 days, never started feeling better,  first diagnosed with pelvic abscess 2 weeks later; drained x3,  still there after 6 weeks PO antibiotics, then treated with 5 weeks IV abx; sick for 6 months with recurrent severe dehydration from loop ileo output, multiple SBOs (adhesions), hospitalized 5x during this period

Cleared for takedown 5/2021, developed post-op ileus, NGT again, discharged after 10 days, now here I am...

Questions for you kind folks:

1. Anyone living with persistent pelvic collections (essentially a leak)? I had what appeared to be multiple pelvic collections at one point (one seeding my fallopian tube which was drained) and another abscess that diminished in size with drainage x2 and multiple rounds of abx. Also I improved clinically with normal white count, no fevers. Unfortunately, the pouchograms I've had continue to show a thin linear presacral collection of contrast. My surgeon says it happens sometimes and if it does not make me sick, he would opt not to treat as it would be another 2 stage, involved pelvic surgery. These presacral leaks can drain right back into the pouch without causing infection. Anyone living with a leak that doesn't really bother them? It obviously makes me very uneasy after all these complications to just wait and see, but another 2 surgeries with more adhesions is not a wonderful prospect either. Such a bummer.

2. A little help/reassurance! I'm nearly 2 weeks out from my takedown (complicated by ileus and longer hospital stay so now about 4 days at home and 5 days eating or drinking (was getting TPN) and thought I would be acclimating quicker? I have to go constantly and by the end of the day feels like I have a golf ball shoved into my anal canal with spikes on it.  Feels like the severe tenesmus of US that I hoped never to experience again. Also have a little superficial but burn but its more the full, aching pain a bit higher up that has me down. When I stand up (If i don't have to go immediately) there is heaviness and pain. Taking walks is both painful and a dicey situation. I do now have my first hemorrhoid which is not helping but don't think this is causing this circumferential, deeper pain. Should say, I feel better (other than exhausted) in the AM once things quiet down middle of the night and I have a few hours without going. I have a sitz bath on order, just bought some Tucks pads, trying not to strain (this is a tough one as nothing comes out some trips if I don't contract a bit).

Is deeper anal pain (severe tenesmus) normal? How many weeks can I expect to enjoy it? Any tips?

Thanks for taking the time to read and answer if you get the chance. I'll be brief on further posts.

Pouch2021

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Hi, Pouch2021! Some of what you’re going through is normal adjustment, of course, but getting used to the idea of a “stable leak” isn’t the usual course, nor is your spiky golf ball sensation. You might have an anal fissure, which tends to cause that sharp sensation in the anal canal. One part of adjustment that can be tricky is getting to know which sensations actually indicate a pouch that should be emptied vs. what might be thought of as false alarms. This can be particularly tough when other things (e.g. a fissure) are going on. Nevertheless, that’s kind of the project, along with coordinating the muscles that have to operate a little bit differently than before. It will be easier not to strain if you aren’t tempted to try to empty a pouch that doesn’t contain much. Ideally you will gently explore how your new plumbing works, so the uncertainty will diminish around what will happen if you ignore a particular set of sensations. Good luck!

In my own experience, that horrible “golf ball with spikes” feeling was the result of pushing. Unfortunately it took me over a year to figure that out, and that was while using biofeedback and pelvic floor PT. I’m over 3 years out and I still strain sometimes.  My mind always thinks a pop of gas or this great release is forthcoming and I’m usually disappointed and then pay for it.

Thanks both. I considered a fissure and definitely have an inflamed hemorrhoid but not severe pain with defecation which I would expect with a fissure. I will definitely be mindful of straining.
I’m almost disappointed that this anal pain and heaviness is not par for the course with a new pouch as I was hoping it would clear up without having to worry about yet one more thing going wrong. So did most people find the initial break-in period pain free? My butt hurts!

Wow, you certainly have had quite a saga! I can relate to the pelvic abscess, though. I had one following my 1-step j-pouch in 1995. I had severe rectal pain like a hot poker up the butt and a fever of 105. It was treated with a drain, but rather than repeated drainage procedures, my drain was sutured in place and I had it for a minimum of a month. I had weekly CT scans and the drain was removed after the abscess pocket completely collapsed. Lucky for me, the leak was short lived and did not recur.

There are a number of people here who have issues with sinus tracts that intermittently abscess. As long as the flow back and forth is open, it usually is not much of a problem. But, if it obstructs and abscess forms, you are back in misery. One permanent repair can be opening the tract to the pouch. If the sinus tract is too long or complicated, then pouch redo may be the only option. I think it is way too early to know if this will be in your future. Fluid collections may or may not be problematic and as long as there is no infection present, they will probably take a watchful waiting approach.

Personally, I think your history is so complicated that you really cannot compare your recovery to others who have had typical outcomes. That said, I myself did have a lot of rectal pain for months post op. It was a long time ago, so I am fuzzy on the details. It was probably a year before my strength and stamina was restored.

Jan

Last edited by Jan Dollar

Water would usually clear up any anal pain I had and not over eating and getting enough fiber. I am not sure if that would help your case though.

I am sorry you are going through all of this!!! We all have our trials and tribulations unfortunately. I will keep you in my prayers! I would definitely express all of my concerns and pain to the doctor and see what he says.

Keep us updated and I hope you get better my dear

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