J-pouch query

[Guest guest]

Hello everyone,

I haven't come to the board in a while now, haven't even popped in to

read for a while, but I was hoping you were the group to ask. Life

has been crazy at our house with all 3 of us having medical problems

the past few months, not just our son (and medical bills X three as

well --oh joy). And, it isn't our son I'm hear to ask about. For

those that remember, my husband (Russ) has a J-pouch, but not for IBD

(our son has the IBD and PSC). Russ (and our son) has FAP, the

genetic condition that caused his colon cancer some 12 years ago.

His J-pouch was to remove his cancerous colon. He's never had any

real problems with his pouch before, but began having a lot of

problems in November. He went to a new GI (old GI retired) in

December and had a double scoping (upper EGD -to check his FAP in the

upper) and a flex sig on his pouch below (also to check his FAP).

Well, his pouch was " diseased " , inflamed, ulcerated, and had a mongo

growth that came back with " unknown etiology " pathology. Russ did a

capsule came a couple weeks later because his GI thought he might

have Crohn's like our son, and he wanted to see the rest of his small

intestine (to check for inflammation). The capsule showed everything

looking great, except the pouch. Russ has never had pouchitis

before, but it looks like he has it now. He started on Flagyl and a

pill form of probiotics and has felt some relief while on these (he

doesn't feel well, but feels better than he did before). The GI Dr

and GI surgeon are talking about starting Russ on Asacol or Rowasa or

a steroid suppository after he's done with his Flagyl, or a different

antibiotic -for the pouchitis (as well as Celebrex or Sulindac for

his FAP, to curb the growth of future FAP polyps/adenomas). For

those here who've experienced pouchitis, what is it like and what

treatment have you had that was successful (and how long when

successful --for full comfort) or that was not successful (and

something to avoid)? Russ was experiencing pain,

cramping, 'gurgling', discomfort, a feeling of being 'stopped up',

and even more than his usual bowel frequency as well as 'urgency'

even when there wasn't much there --also it was much, much more runny

and acidic. It's better now, but definitely not 'fixed'. If he had

a fever at all, it wouldn't have been much, because he didn't note

that (the Dr asked, though). He's been on the meds for two weeks

now. He's nervous.. is afraid there might be a chance that he might

have to get rid of the pouch or have it 'fiddled with'. He's also

nervous about the 'unknown mongo thingee' in there and would like to

know if anyone has experienced a giant hernia-like, polyp-shaped

inflammation due to pouchitis --and, if so, how to get rid of it and

not get one again. He goes in next week for another flex sig so the

GI surgeon can get a look at the growth (GI Dr did the first flex

sig).

I'm sorry I haven't been reading and posting and then come to ask a

question, but I'd be very, very grateful for any responses. I

thought we were going to have a " slower " year for 2008, but we're in

for another long year (x 3). Thankfully, nothing is 'bad', though.

Just expensive, time-consuming, and anxiety-producing.

I hope (truly hope) you've all been as well as possible, all of your

loved ones, too. Some of you I know more than others and I've kept

you ( & your loved ones) in my thoughts and prayers especially, but I

always send out a general prayer for all who live with PSC, too.

Thanks for taking the time to read this.

Meghan, wife to Russ and mom to Wyatt--PSC 1'07 / IBD 1'07 & 6'07 /

FAP 8'01 / autoimmune hives 6'07 / leg braces 1'08

[Guest guest]

Hi Meghan;

Sorry to hear about your family's multiple health problems, and

especially to hear about Russ's pouchitis and 'unknown mongo

thingee'. Do you think this could be a " large villous adenoma " ?

Beveridge IG, Swain DJ, Groves CJ, Saunders BP, Windsor AC, Talbot

IC, Nicholls RJ, RK. Large villous adenomas arising in ileal

pouches in familial adenomatous polyposis: report of two cases.

Dis Colon Rectum. 2004 Jan;47(1):123-6.

http://www.ncbi.nlm.nih.gov/pubmed/14719160

It seems that there is a pretty high incidence of these villous

adenomas in the years following pouch construction in FAP patients:

Parc YR, Olschwang S, Desaint B, Schmitt G, Parc RG, Tiret E.

Familial adenomatous polyposis: prevalence of adenomas in the ileal

pouch after restorative proctocolectomy. Ann Surg. 2001 Mar;233

(3):360-4.

http://www.ncbi.nlm.nih.gov/pubmed/11224623

Sorry this is the only possible clue that I could come up with.

Best wishes,

Dave R.

[Guest guest]

> Sorry to hear about your family's multiple health problems, and

especially to hear about Russ's pouchitis and 'unknown mongo

thingee'.

Thanks, . It's trickier when we all have health issues, but a

lot of other people manage it, and we're up to the task

(reluctantly).

>Do you think this could be a " large villous adenoma " ?

Yipes, I hope not. I googled after clicking your links for more info

and saved the links and 'googles' to share with Russ tonight when he

gets home. It is odd to us that pathology came back inconclusive

( " unknown " ), but they only biopsied a smidge of the thing.

Hopefully, the surgeon will get a beter sample to biopsy next week.

And, we'll ask about the possibility lf it being a villous adenoma.

Thank you, , for suggesting it.

> It seems that there is a pretty high incidence of these villous

adenomas in the years following pouch construction in FAP patients:

Russ has been fortunate these 12 years in having very few problems

since the cancer with only one brief 'snag'. I suppose

another 'snag' was due again at some point. He is not enjoying this

pouchitis experience at all and really wants to know how to end it

and avoid it in the future. We've wondered if the mountain of stress

in '07 could have played a part, somehow brought on the pouchitis

(and 'unknown lump'). The Dr didn't give us much information on

pouchitis, just a sketchy outline. He kept saying it was rare for

an " FAP j-pouch " to get it, as opposed to an " IBD j-pouch " , which is

why he is looking into whether or not Russ has Crohn's, too. Russ

and I don't think he does, but the Dr is suspicious. We were pretty

certain that Wyatt's IBD and PSC came from my side of the family,

where a variety and plethora of autoimmune illnesses abound.

> Sorry this is the only possible clue that I could come up with.

It's a big help, , even if the growth doesn't turn out to be

it. It's something that possible for him b/c of his FAP, so it helps

to know about it whether it's there now or might be someday. It IS a

help. Thank you.

I hope your family has been well, especially your son.

Take care,

Meghan