pouchoscopy results/ diversion disease?!?!?

Depending on the surgical plan, step 1 often leaves behind a fair amount of colon, which can develop diversion colitis. Even without that segment of colon diversion pouchitis is possible. Both of these result from the normal fecal stream being absent. After the biopsies come back you'll be able to have a clearer conversation with your doctor. Is your next surgery scheduled?

Hi scott, thanks so much for your quick reply, and sorry for my very delayed one, my little ones not been to well so ive been completly rushed off my feet...ive got the reversal date as 10th september this year but im seeing my consultant this monday for the results of these tests and it was suggested that there had been a cancellation in july so all being well I may be able to have the op in july instead  

 

Does the diversion poucitis clear up when its all connected up? 

Yes, if diversion is the cause of the inflammation, restoring the gut continuity should improve things. Most people do not realize that the mucosa gets nourishment from the fecal stream. A delicate balance though, because if the bacterial balance is incorrect, regular pouchitis can ensue. 

 

Such is life with an ileal pouch!

 

Jan

Thanx jan, that was my worry signs of future poucitis :/ 

Is diversion disease a sign that im more likely to get poucitis? And any suggestions on best probiotic to help with inflammation in the pouch?

The most studied probiotic for pouch health is VSL #3 DS. It's prescription only (for the DS strength), and some health insurance covers it. It (and any oral probiotic) may be useless for diversion pouchitis, since little or none of the probiotic will ever make it to the pouch. Probiotics administered by enema might help, but I'm not aware of any studies to support the idea.

 

Don't drive yourself nuts trying to predict whether you'll have pouchitis after takedown. In particular, try to remember that most cases of pouchitis are simple to treat with a short course of antibiotic. The folks with more persistent pouchitis are not as common as the numbers here make it seem.

Thanx scott! I asked my doctor about vsl #3 and he said he can give it to me on prescription im definently going to give that a go after takedown more so. it is something I can take regularly or is it only taken for pouchitis flare? I want to try and maintain healthy bacteria

 

I take a maximum dose (4 DS packets daily), and have done so for several years. It seems to work best at preventing pouchitis rather than treating it. It's costly if your insurance doesn't cover it - a maximum dose costs over $600/month, though many people do fine with 1/2 or 1/4 of that dose.

Thanks so much scott really helpful advice I see my consultant on monday for the biopsie results Im keeping everything crossed :/ and then I guess ill take it from there!

Hi guys I've finally had by biopsy results albeit given to me by a really rude nurse who told me that doing any more tests would be a waste of resources and that it seems to be taking over every second of my life!

Anyway...the results she gave me where no cuffitis but infanta ion is the pouch that isn't bad enough to be called pouchitis (does that make sense?) the pouchoscopy was initially done because of some bleeding when I wiped but I had control and no urgency, since then (I think maybe a month ago) the bleeding has increased to all the liquid coming from the back passage being light pink, and more bleeding when I wipe when u hold the tissue when I wipe and basically empty the pouch on to it the whole tissue is a light pink colour with some bright red, I now have some urgency and find myself waking in the night to go to the loo.

At the moment I have my loop ileostomy and the u pouch created inside, my reversal is set to be in October 22nd, I'm really worried, is any of this normal? I can't ring my nurses as she told me last time there's nothing they can do till the operation which u understand but I could really do with some advice and support, thank you so much in advance

Sally xx

Ok change that to, a lot of urgency which sometimes starts with some pain in lower abdomen kind of like stops me for a few seconds for the feeling to pass, then I have to run to the loo I can't always control it like I could before

All pouches have a minor level of inflammation present, but this is not considered pouchitis. Your bleeding is something else altogether, since pouchitis and cuffitis has been ruled out, the bleeding must be coming from higher up. 

 

As far as urgency while diverted goes, I don't think it is too uncommon. It can take a lot of time for the sensitivity to calm down.

 

Jan

Thanks for your reply jan, I've been stressing since the pouchoscopy, not sure what to think, as for the bleeding possibly coming from higher up would that suggest chrons? As far as I can tell I've never had any bleeding in the bag, could bleeding be from aggrivation or a cut or anything else? there blood every time I empty from my back passage and I empty sometimes 10+ times a day, my nurses just say there is nothing that can be done and some people even experience bleeding with their pouches??

Sometimes bleeding is just hemorrhoids, even when if colors the water. Does that seem likely? It's only in the movies that a little blood on a handkerchief = imminent death.

Thanks Scott, I just read symptoms of hemeroids and I may have, I don't have pain, but yes to pressure and discomfort and initially it was sorry for the detail itchy and irritated, but there no visible signs that it could be that so possibly internal? And the blood is bright red on the tissue as well as light pink into the loo, should I ask my doctor, my pouch nurses don't seem very interested at the moment 😐

Internal hemorrhoids are, well, internal (in the anal canal). If you're confident that's what you have, you probably wouldn't do much about them in the short term. It's up to you whether to have someone confirm that possibility. They can bleed enough to make you anemic, so it might be wise to take an iron supplement to prevent that, if you can tolerate one. Anemia is a poor way to prepare for surgery.

 

It's awkward when you tell your doctor's staff "I'm bleeding!" and they reply "who cares?"

Yep awkward indeed, I thought I'd leave them be for a while, but I ended up leaving them a message this morning as the bloods getting darker and slot heavier, I asked if its ok for me to go and see the doctor and be examined to see if the problem is hemeroids or if because of the pouch it's not a good idea, let's see what they say! Thanks for help �� xxx

Sally xx

I can't imagine that the doc would not identify bleeding hemorrhoids during the scope and exam, but I guess it is possible.

 

Jan

Thanks for the reply jab, I did have a pouchoscopy and the lady who preformed it was very good, the bleeding has got much worse since a month ago when they did the scope, could hemeroids have developed since? The other thing that was playing on my mind was during the exam she said there was a small tear, I imagine she meant in the anus because the nurse said following the exam if it was in the pouch it would be an urgent matter could so much bleeding be firm there?

The pouch nurse got back to me today and said she will make me an appointment to see the surgical team as she doesn't know where the bleeding could be coming from she suggested antibiotics but at the same time she said you shouldn't need them at the moment, hoping I can get some answers (fingers crossed)

Sally xxx

Sounds like a fissure and you definitely could be bleeding from that. Scoping could make it worse. It would cause a lot of pain when having a BM, and intense spasms of the sphincters afterwards. But, being diverted, that probably is less than if you were not.

 

If it was a tear in the pouch, she would not be so cavalier about it.

 

Jan

Thanks jan, sorry for such a late reply, I've got an appointment on the 24th of this month, maybe they can give me some answers, the bleeding is definently increasing, but I've got a new symptom that's come about a few days ago but has become almost unbearable today, my abdomen on the left side right at the bottom is so painful, what's scary is its the same pain in the same place that I had when I had colitis before my ileostomy, I'm really concerned, any ideas what it could be? Any advice would be great thanks in advance

Sally xxx

Difficult to say. Could be pouchitis, partial obstruction, adhesions, gas pain, or ovarian cysts, to name a few.

 

Jan

Thanks jan, the pains still there, sometimes it's duller than other times, so interesting that you said pouchitis, my consultant is adamant that I can't get pouchitis until I'm connected up, is that true? Or is he fobbing me off once again?!?

Also the last colonoscopy I had showed 'diversion colitis' could this be giving me these symptoms? I've just never experienced so much pressure on the back passage can't sit or sleep it's miserable and the urgency is just reminding me of colitis flare days, horrible I can't do anything with my kids and I'm just miserable with them all day, feel like such an awful mum ��

Sally xxxx

Diversion pouchitis or even cuffitis is every bit of a pain as when you are connected, and treatment is indicated.

 

Jan

Is diversion pouchitis the same as diversion colitis (my pouchoscopy report said I had diversion colitis)

I've been literally begging my consultant that I just don't feel right and all I'm getting back is when ur reconnected it will sort itself out, should I just shut up and put? I just don't know what's normal to feel with a loop ileostomy

And the worst thing at the moment is that feeling of straining and pushing on the loo but with nothing or next to nothing coming out :/ very confused

Sally xxx

Could be diversion pouchitis or cuffitis. Diversion colitis is technically in the colon (which you don't have). So, depending on how biopsy specimens were identified, the resulting diagnosis can vary. Even without biopsy pathology reports, the doctor's dictated report could indicate diversion colitis simply as a "blanket" diagnosis, which is inflammation that is caused by fecal diversion, not that caused from an inflammatory resonse to bacteria.

 

The difference is that diversion pouchitis is treated by restoring the fecal stream (takedown of the ileostomy), not antibiotics. There are nutrients in the fecal stream that feed the gut mucosa. Mesalamine enemas and or short chain fatty acid enemas may help in the meantime while you await take down.

 

Jan

Thanks so much jan, that's made me feel better, I'm hoping it is all down to needing to be connected up, I'm seeing my consultant on the 24th of this month fingers and toes crossed that thy can give me some answers and help!

The other thing is was reading could I have a bladder infection?? My symptoms are some burning when I urinate but very slight, no urgency to urinate or feeling like j need to rush back to the loo, but I have lower abdominal and lower back pain, and rectal pressure which has all just come about together?? I'm thinking possible bladder infection and and the bleeding from back passage a tear? Thanks for all the help and advice I really really appreciate it

Sally

Yeah, bladder infections are pretty common, and definitely increase your misery. Hard to sort out the sensations when everything is on fire down there! Typically you'd get urinary urgency, frequency, burning, and possibly cloudy and/or bloody urine. But you don't need all the symptoms. your resistance is low after illness and surgery, and being in the hospital is the #1 place to get an infection like this. A little blood work and urinalysis should rule it out or in. 

 

Jan