My Disturbing Pouchoscopy Pics

This is the one that has him confused, showing normal neoterminal ileum tissue between the pouch and the area of inflammation 20 cm above the pouch.

I had my first pouchoscopy on 09/19/14, 6 years after my surgery. I did not realize that I should be doing this at least every 2 years. The good news was that the pouch was in excellent shape. About 10 days after the pouchoscopy I started having constipation issues having the urge to go 3-4 Times per hour with very little output. This went on for a couple of weeks until I requested another pouchoscopy be done. On 10/28/14 it was done and revealed that I had a severe case of pouchitis along with numerous ulcers...cause unknown. I was amazed how drastically things changed in 5 weeks. My doctor put me on augmentin (875) and I am having a positive response. I hope this solves the problem .... because another thought is that I may have Crohn' s disease.

Wow, this is really close to the disturbance of your healthy j-pouch by the invasive scope. I can only speak for myself but my j-pouch gets worse after pouchoscopes or any procedure. I'm hoping that the flagyl gets rid of whatever is happening inside. Don't be surprised if it takes longer than one course of antibiotics too.

I'd like to suggest you begin a new topic in the general section about this so more people will look at the post

THIS IS AN OLD POST..ct barrister doing well from more recent posts..

Dear CTBarrister, 

 

The 1st one is the pouch outlet. Yikes! That image looks just like my daughter's ulcers. What did you do to treat them? Reading your thread was hard, hearing how much you have gone through. I hope you are doing better and that those issues have been resolved or that you have a plan of action now. Sending best wishes.

That image looks just like my daughter's ulcers. What did you do to treat them? Reading your thread was hard, hearing how much you have gone through. I hope you are doing better and that those issues have been resolved or that you have a plan of action now. Sending best wishes.

The 1st one is the pouch outlet. Yikes!

Art Mom-

 

Those images you see from 2012 - I have actually been dealing with inflammation similar to that in my Pouch since 1995.  The treatment is rotating antibiotics: cipro, flagyl, augmentin and xifaxin mostly, but also others.  Been doing that regimen, with Entocort mixed in when things get really bad, for 20 years.  It ameliorates the symptoms, but obviously has not gotten rid of the inflammation.

 

But here is the thing: as long as I take my antibiotics, I am totally functional.  I am a trial attorney.  That very inflamed bowel has been in many courts trying many cases.  I have never missed time from work for health issues, except now I have thyroid cancer which I am having surgery for Tuesday and we'll see how long that keeps me out.  I am predicting two days.

 

In 2007 or 2008, they first noticed inflammation above my pouch in the lower ileum.  That is when the Crohn's questions started being asked and I got sent down the road of CTs, MRIs, Prometheus Test, etc.  When the smoke cleared on all those tests they still don't really know what it is, except that it's IBD.

 

It got worse from 2010-2012 when I was eating a really horrendous diet, and then when I started cutting out carbs and sugars in 2013, plus went on a course of Entocort, things improved.  However, I have now taken a step back and my most recent scope pics look like those "Yikes" pics I posted  in 2012.  The good news is all biopsies came back negative for dysplasia, positive for chronic, active inflammation.

 

The bottom line is the treatments I am using - antibiotics- hold my symptoms in check but they aren't getting rid of the chronic inflammation.  The chronic inflammation hasn't killed the pouch, YET.  But it's becoming very worrisome to me.

 

In my somewhat cynical opinion CT Scans and MRIs and scopes have value only in identifying where the inflammation is.  As diagnostic tools, they are useless.  It's inflammatory bowel disease.  Who cares what we call it? We need to treat it.

 

If I may use a baseball analogy: a baseball pitcher can throw a pitch that looks baffling and you can call it a forkball, a split fingered fastball or a cut fastball.  What the pitch actually is doesn't matter.  What matters is hitting it.  And the same principle applies here.  What your girl has may be Crohn's or Pouchitis, but what matters most is how it gets treated.  Good luck to her.  Hope you have comfort knowing I am able to live with it for the past 20 years, looking as bad as those pics at various times including now in 2015.

CT, I know you've felt strongly that your low carb (paleo) diet was helping a great deal. Such diets can be quite difficult to sustain. Did the currently worsening/worsened inflammation occur despite fairly strict adherence to the diet?

Scott-

 

I honestly cannot answer your question because my adherence has not been as strict as it could have been, especially of late.  However, in 2010-2012 my diet was much worse, I was over 200 pounds and eating indiscriminately.  Now I am weighing about 174, eating better (although perhaps not adhering as strictly as I could be to Paleo and eating carbs and sugars here and there), and my scope pics are just as bad or worse than what I posted in 2012 earlier in this thread.

 

I will see if my new GI will email the pics to me so I can post them and you can see and compare.

 

All that being said, and even with the thyroid cancer situation I am now dealing with, I feel good.  I have been busy as all hell the last few weeks.  My bowel movement pattern is more or less the same.  It's really hard to put a finger on anything, except I know I am dead meat if I am off antibiotics for more than 7 days, and I also know that antibiotics are only treating the symptoms and are not clearing up the inflammation.  The pouch hasn't been inflammation free the past 20 years and that is a scary long time.  I am dodging a rectal cuff cancer bullet and don't know how much longer that bullet will be dodged.  I am also hopefully dodging a thyroid cancer bullet although we will see about that come Tuesday.

Maybe when your thyroid cancer is hopefully removed and you are back with it functioning better your pouch problems might improve. My GI is adamant that my thyroid function be in the normal range.  It has been functioning crazy since my surgeries 4.5 yrs ago.  It affects everything in our body as it drives our metabolisms.  My worst j-pouch problems occur when my thyroid is messed up.  I'm not saying that is causing your current problems.  I'm saying it might be a contributing factor. A year ago my scope was so good that he said I didn't need to be checked again for 2-3 years. That didn't work out as they scoped and did a dilation of my efferent limb thiis February. Just a little bit to think about.

 

Good Luck with your surgery! 

My pre-surgical blood labs came back and my endocrinologist told me that my thyroid hormone levels were all "mid normal".  I do worry that the likely status of being hypothyroid for at least a period of time could impact on my J Pouch function.  Only time will tell.

 

Thanks for the wishes on surgery, at this point I am a little more than 24 hours away from having my neck cut open like  a halal chicken.

When a very challenging treatment is unlikely to be followed strictly, simply because human beings are involved, the failures are often ascribed to not following the treatment regimen properly. There are two problems with this: 1) any treatment that can't be used effectively by human beings isn't very useful, and 2) sometimes these failures are really because the treatment (even when folllowed strictly) isn't very effective, but the treatment's effectiveness rarely gets "tested" by strict adherence.

 

I'm sorry you have to deal with all this, CT. Rectal cuff cancers need to be watched for, but they're uncommon. Thyroid cancer is *very* treatable, and often causes no harm even if it isn't discovered. You'll be fine, but what a nuisance.

That is good news about your thyroid levels. It looks like your surgery is a go! 

The way I see it, the low carb diet concept is not necessarily an all-or-nothing thing. I do see the point in the notion of self-doubt when a person blames their non-compliance to an impossibly strict diet for their poucitis relapse. But, the modern diet, and the American diet in particular, includes way more carbs than are needed for health. So, even if eating low carb does not "cure" pouchitis, it can lead to better health overall, and for many of us, improved pouch function.

 

So, I agree that imposing restrictions that are not sustainable are designed to fail, it makes sense to look at the diet to help improve function. I feel the same about fruit and vegetable restrictions. We need variety in our diets for both health and happiness. But, diet alone cannot replace medical management or avoid surgery if there are chronic issues or pouch failure. There are no panaceas.

 

Jan