Those sound like some pretty big ulcers, and I bet your mind is running to the possibility of a Crohn's diagnosis, which of course is a possibility. However, the good news is that suture line ulcers and inflammation are common, and should not be viewed as a sign of Crohn's, even if granulomas are found in that location. This does seem to point more toward chronic pouchitis. But, what troubles me, and I sure you also, is what comes next if this is antibiotic refractory chronic pouchitis. I wouls assume this means topical steroids or mesalamine, followed by oral steroids/mesalamine. Failing that, I think Immune modulaors, such as Imuran and biologics are next.

http://www.dept-med.pitt.edu/g...eadings/shen2005.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/

Jan

Is it a jpg? If not, try saving it as a jpg file.

kathy

It is PDF (Adobe), I tried compressing it as a zip file and I was able to do that, but then when I attempted to upload it, it was rejected as exceeding zip file maximum bandwith. It was not over by much. JPG format also was in excess of what was allowed. This means I will likely have to wait for the Doc to send the individual pics to me and I could then post the pics 1 by 1. What I attempted to upload was page 1 and then page 2 of the sigmoidoscopy report, which has the pics and shows those punched out ulcers. This is definitely looking worse than any prior ulcerations I have seen in the pouch. My concern is not Crohn's, but rectal cuff cancer. The inflammation looks worse, even though I don't particularly feel worse except the last week or 2.

quote:

I wouls assume this means topical steroids or mesalamine, followed by oral steroids/mesalamine. Failing that, I think Immune modulaors, such as Imuran and biologics are next.

I tried Imuran at the end of my time with UC and my body rejected it or I should say my liver rejected it. Around 1991 or so.

I will post the pics next week when I get them. I just have the report with the pics and it is too big to upload even breaking it up into 2 pages. I have it in zip and JPG, it is just too big.

Have you tried Entocort? It was able to knock a lot of my pouchitis inflammation out. I only have a small amount of inflammation left at the anastomosis line like yours. My pouch went from total inflammation to just a little bit. I was shocked to see the latest scope.

Good luck!

I'm sorry--that's super crappy news. Are your doctors going to repeat the biopsies soon?

Oh sure, transitional zone cancer would be a big worry. Probably does not help to know that it is quite rare. Just having constant, simmering pouchitis for 17 years probably makes you worry enough without signs of increased inflammation now. Odds certainly on your side, but it does not make waiting for biopsy results any easier.

If it were me, I'd be asking about short term oral and/or topical steroids to get this into as much remission as you can get, then maybe rethink your maintenance treatment. Even though you were not very symptomatic, they need to treat the chronic inflammation that is significant. Otherwise, cancer/dysplasia could pop up without being able to see it.

Fingers crossed for you that this gets turned around quickly!

Jan

I think all options are on the table and if steroids need to be used we will have to do it.

The pics of those deep punched out ulcers in the distal pouch are concerning. The report also notes and pics show segmental inflammation in the neoterminal ileum, 4 cm long and 20 cm proximal to the pouch inlet. This is a bit larger than what was previously noted in prior studies. However the rest of the distal ileum is normal.

When I can get the pictures posted next week, you will see what I am talking about. The pouch is in much worse shape than it was in the last study in 2010.

Biopsy results due back next week as well.

djb,

I am really sorry to hear about this. Have you had any symptoms lately that would relate to your pouch results?

Please post your pics and I will be praying for you to get good results with your biopsies.
I would try not to get too concerned about the cancer as much as I would with alternate treatments to control the inflammation.

I am not sure if your constant inflammation was in the distal pouch as mine is or not. Our GI did not go above my pouch at my scope time (which he indicated he was going to) and I was surprised. I am seeing him next week and will discuss this with him.

I'm so sorry. I am getting my pouch out on Monday but for the last month or so I did use Entocort and it felt like it was dimming down the inflammation.

quote:

I am really sorry to hear about this. Have you had any symptoms lately that would relate to your pouch results?

In the last 2 weeks or so I felt kind of lousy but those deep punched out ulcers in the distal pouch likely developed long before that. The distal pouch has always been an area where I had ulcerations but never before did I have ulcerations that looked like this.

Our GI scoped my neoterminal ileum and the inflammation there, as noted above, is much worse than what we previously saw, but most of the neoterminal ileum looks okay.

My symptoms and day to day life do not match the amount of inflammation I am seeing. Obviously, something is going to have to change in my regimen. Probably entocort but we have to clear those ulcerations up. If not leading to cancer they can maybe lead to perforation of the pouch. They are deep, punched out ulcers and I never had anything like that before.

Pics will be sent in a few days from what he told me. I have the pics already in the report but it is too big too upload either as a zip or as a JPG.

use an online photo host site like photobucket, then you can upload them there for free, then just post the image into a post for us all to see!

Subsky,

That is a great idea. I will see if I can do that tomorrow morning. All the pics are saved on my computer at work.

Can I upload them to photobucket and then post a link to that site here?

Yes, you can post a link either by just copy and pasting of the URL or using the URL button feature in the message window.

Jan

Okay, here goes. The first link is page 1 of the sigmoidoscopy report and 3 pics:

http://s1174.photobucket.com/a...edureReportPage1.jpg

The second link is page 2 which is the rest of the pics. Note the deep punched out ulcers in the distal pouch, last 2 pics:

http://s1174.photobucket.com/a...edureReportPage2.jpg

I have had ulcerations in the distal pouch for 17 years but nothing like those bad boys before. And honestly I don't really feel as bad as you may think looking at these pics.

Pretty gross huh? We have to do something about those deep ulcerations, they are going to ulcerate right through the wall of the pouch!

DJB, so sorry to hear about your report. You've kind of been my silver-lining for the past two years that chronic pouchitis isn't really that big of a deal, and that I can live a totally normal life for at 17 years! I really hope this isn't that serious and there are treatments to get you back on track. Best of luck to you! Thanks so always keeping us posted. I checked again with my GI, and he only wants to see me every three years for a scope...maybe after your post, I will reconsider that.

clz81.

It's unfortunate that my 2010 pouchoscopy pics, which I also posted, are not still available. They demonstrate how bad things can get in 2 years. My 2010 scope pics, as far as the inside of the pouch goes, looked the same as it did every year from 1995-2010, A significant worsening in the observable inflammation occurred in the last 2 years.

My Doc wants to scope every year because of the rectal cuff cancer threat and now that we see what my distal pouch looks like, I am glad to hear that and anxious about this year's biopsies which come back next week.

Stay positive and lets hope for the best for those biopsy reports. I'm also playing the waiting game with some biopsies, hopefully know on monday if the UC has turned into crohn's, I'm hoping not.

Believe me I am pretty positive, but intellectually I am a "tell me the worst case scenario so I know it when it comes" kind of a guy. Keep in mind my colon was dissolving when it came out and I was not far away from perforating from what my surgeon told me, so there is some history here. Although we are now dealing with inflammation of ileal rather than colonic tissue, I am seeing some disturbing similarities between the pattern of my UC and the pattern of my pouchitis. Which maybe raises further questions about whether it has been Crohns Disease all along, fooling a number of excellent doctors for almost 40 years.

You're probably not fooling your excellent doctors, DJB Husky. As you know there is no definitive test for Crohn's versus UC. However, I did hear a CR surgeon speak about chronic PI and his belief is that most chronic PI is really Crohn's. Makes sense.

Sue

Sending you lots of support - those are some really nasty pictures. It looks really angry. I am surprised that you do not feel horrific or at least notice a difference between now and a couple of years ago.

I hope you get some good news soon re biopsies and then can get on with finding some new drugs to calm this down. You are my pouchitis hero - you can get through this!

quote:

I am surprised that you do not feel horrific or at least notice a difference between now and a couple of years ago.

So am I. It's a bit shocking to me because the symptomology I am feeling and experiencing simply does not correspond to the deterioration we are seeing in these pics.

I am sweating the biopsy results, at the moment. If everything is OK we have to come up with a new treatment regimen to turn this around.

Oh my, I just read this and I am so sorry. Keep us informed and thinking of you.

Ally Kat,

This thread was started in 2012 and the info is now dated. I/my pouch have gotten much better since then. I started the Paleo Diet in January 2013 and my last 2 scopes in 2013 and 2014 showed improvement. I also lost a significant amount of weight - about 30 pounds. Mostly as a result of not eating tons of carbs and sugars. These pics show the harsh result of bad eating habits.

ct this may sound stupid but are you just reacting to the report and pictures?have you actually talked to dr..because when i got my report after i got home from cleveland i kind of freaked out it sounded scary as hell and it too had ugly sounding ulcers in pouch..i immediately wrote shen..he said..something like his visuals is more accurate than the histology..he told me to disregard..if you want exact explanation i can try to find it but that was jest of it.. . basically he felt less concerned then i was with my condition..

thinking your dr. is best one to tell you what report and pictures mean and if you need any change in treatment...

just my thoughts..you seem to have a very good dr...

take a deep breathe ..you have come so far for so long ..i`m feeling like you will get a handle on it ..

thinking only good thoughts coming your way!!!

rebe

I have been given pics of my pouchoscopy for years and the ones in 2012 were noticeably worse than the one done in prior years. However like I said, this thread is dated and things are better since then. All of my treatment has been approved by my Doctor. My 2 scopes in 2013 and 2014 since starting this thread were better except he found a polyp in the recent one last month, which he did not remove and I am questioning why he did not do that.

Also don't forget in the 2010-2012 time frame I belonged to my client's dinner club and was regularly eating at 5 star restaurants, consuming rich food, vast amounts of carbs and sugars, etc.

ct i had a polyp removed jan. in my pouch..i had a little touch of blood on tissue so could not run off to cleveland for shen and had a local g.i dr. i consulted in past take a look..(he knows i have pouch and have history of pouchitis)...while doing it he said you have a polyp in pouch he removed it..did a biop. on it and said it was an inflammatory polyp..not sure if one has to remove it but he was in there and just did it..good idea to ask your dr. about that...i do not think polyps bleed ? but my blood spots disappeared.

please keep us updated on results..and again sending out good vibes it can be explained ,handled and successful treatment getting you and pouch back on track..you are my pouch hero..

fingers double crossed!

rebe

I sent an email to my Doc and he emailed me back that the biopsies were all negative, "no concerns." He will call me regarding the polyp. I want to find out why he left it in?

Whether to remove or just biopsy an inflammatory polyp is largely a judgement call. I believe it is mostly in regard to the size. I wouldn't question it. Now, if it was your typical adenomatous stalked polyp that was left in place, that is another story.

Jan

Wow, I was reading this thinking how bad it was that your diet hadn't helped your pouch CT. Then boom I see it's a 2 year old thread!

It's not scientific proof, as we didn't have another you staying on your prior diet nor did we have a control subject on a "normal" whatever that would be diet. But it's good anecdotal evidence of how changing your diet affected your pouch. (Please correct me if I didn't use the correct terms )

Good for you!

geese ct.. ..i just realized we were responding to ct barrister on old emails..duh!!!wow so glad it was old and then you are doing so as well as we thought prior to those old posts.. in fact at this point you are doing better than me!! ..i tried one week on and one day off..output increased as well as gas etc..started my second week on levaquin tonight..doesn`t look like i can do what i did in dec. nor what you are able to do!!!

why in gods name do old posts pop up on threads..

I did post after Alley Kat resurrected this old thread to say that this thread is dated and things have gotten better since then......if they had gotten any worse, my pouch would be out by now. It was after this scope in 2012 that I went on Entocort for a few months, and then started the Paleo Diet. Some things had to change after this scope in 2012, and they did.

The polyp I referred to earlier was seen on the recent June 25, 2014 scope and I will post those pics when I get the chance. But those pics are better than the ones I started this thread with.

The old posts pop back up when people do a search for items that might help them, and then reply to an older post. Searching for useful information already posted is a great practice, but it's best to check the dates before replying.

Two thumbs up Scott.

Sue

Ops!