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What tests/scans should I be asking about?

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Posted 4/26/2015 12:31 AM (GMT 0)
So some of you will be aware of the problems I've had since my takedown in November. In a Nutshell, tenesmus, sphincter spasms (also causing pain in testicles, prostate and stomach), passing very small amounts of waste, only to feel the need to defecate within minutes of leaving the bathroom (relates to tenesmus I guess). A very irritable and "grumpy" pouch.
I've now gone back to a liquid/soft diet, as it stops the pain, but not the other issues. Current diet consists of Complan mixed with milk, yoghurt and cheese spread (I know it's processed, but seems to agree with me). No surprise I'm finding it hard to maintain a healthy weight and have low energy levels.
After two outpatients since leaving Hospital the only examination conducted has been a digit inspection for stricture and the integrity of Anastomosis, both of which have been fine.
So, what should I be expecting to be done now? A scope, similar to a Colonoscopy at the least right?
I'd welcome all input here, as I really need to start tackling my surgeon and be proactive in trying to find some resolution to my woes. It can't just be the old chestnut "it takes time" after almost six months, surely?
Posted 4/26/2015 12:41 AM (GMT 0)
I'm sorry u are going through this. I had severe rectal issues, mainly fissures. I do not have that now with the ileostomy, even though I do still experience a discomfort in my rectum from time to time with the build up of rectal mucous. I continue to struggle with pelvic floor dysfunction and have to use warm water enemas to release mucous, so I can never be reconnected.

Have you considered going back to the ileostomy?
Posted 4/26/2015 12:51 AM (GMT 0)
answers4me, regarding a return to ileostomy, yes, I continue to debate it. I don't want to give up just yet though, it took me three years to decide on giving the j-pouch a go. Life was good with my ostomy, but there was always the question of "what if"?
Maybe it's the suggestion I will get from my surgeon, I don't know, he hasn't mentioned it yet. He gave me GTN paste to try, followed by steroid suppositories, neither of which helped. Each time I've seen him he says things like, "hopefully it will settle in a couple more months". ***, I don't think so!
Posted 4/26/2015 1:32 AM (GMT 0)
I guess you have fiddled with diet a lot. Have you tried juicing vegetables and fruits? That's how I have been getting my nutrients since I also can only tolerate white foods, such as white bread, white rice, potato, yogurt, chicken, etc.
I am fat since eating this way though. Ugh. But I'm a woman.

Have you tried the squat position to poop? I know some have sworn by this to help with pelvic floor dysfunction. It might be worth a try for incomplete emptying.

Can you take any fiber at all? I know that might help to fluff up the stool and keep it together. That's a thought, but I know not many of us without a colon can tolerate fiber. They have some fibers now that aren't likely to cause bloat.

I'm just shooting ideas out at you. I am living my own freaking nightmare with my 4th parastomal hernia and blockage after blockage and will require another surgery soon.
Posted 4/26/2015 3:51 PM (GMT 0)
Have you tried any bulkers, like metamucil or possibly even veggies? Personally I've actually found finding the right ratio of Immodium to fibre causing the stool to bulk up so it's easier to pass and when it does pass it's like you know you've gotten it all out kind of feeling.

You'd really have to get a scope of the pouch to determine if theres any ulcers in the pouch causing you problems as well, you can try taking a dose of pepto bismal daily (chewables) in the mean time as the heavy metal in it works against most bad bacteria that causes pouchitis mixed with a good probiotic sometime after!
Posted 4/26/2015 4:43 PM (GMT 0)
I agree with getting your pouch scoped. My surgeon "highly recommends" annual scopes even if the pouch is functioning well, he wants me checked for colon(?) cancer annually. You need to see what's going on inside the pouch. You might want to get a CT scan to see if there is any adhesions effecting your jpouch/Intestine, maybe that is causing you spasms.

Have you tried any antibiotics? If your having problems then an antibiotic might help.

I feel better when I eat a paleo diet.
Posted 4/26/2015 5:46 PM (GMT 0)
You have been checked digitally for a sticture (at the anastomosis site) but I would inquire about being scoped to check for one higher up like at the inlet of the pouch.
Posted 4/26/2015 9:07 PM (GMT 0)
Thanks for the comments.
Keith, when I had my pouch constructed, the op took two hours longer than scheduled, as they had to free up adhesions first. I don't doubt I have lots going on in there, and had already been wondering if they might be the culprit.
Marianne, you raise a good point, I already know there was/is a stricture on the part of intestine that used to form my stoma.
Posted 4/27/2015 2:01 PM (GMT 0)
SL,

When I had my first sticture some times it felt like a freight train going through my small intestine; I could feel the stool and gas moving sometimes.

My GI takes care of my j-pouch, meds, procedures and dilatations if needed. He also ordered the CT scan; I'm sure if I needed adhesions removed then he'd refer me to a surgeon. Maybe you are better off consulting with a GI instead of your surgeon.
Posted 4/27/2015 3:10 PM (GMT 0)
Keith, being in the UK, I have to go with what's offered. I haven't had a GI for several years. Ever since my first surgery it's surgeons I've been referred to exclusively.
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