Yeah those last few look pretty gnarly. I hope they sort this out for you asap man. I think oral and possibly also supp. steroids would be used to clear those up. Good luck.

DJB,

Has the GI started you on any meds at this time? Is he waiting for biopsy results?
When he did my scope and found rectal cuff inflammation he immediately suggested canasa. I hope he sorts this out for you and my guess is he is going to suggest entocort as he talked about this med with me last time I saw him.

I will let you know how my visit with him on Monday goes as I have been on canasa for weeks and know my cuffitis is still active and suspect the pouchitis is also by the way I have been feeling.

Have you been feeling any different than you normally do like having increased frequency, stomach discomfort etc? It is bothersome to think this could be going on and you are relatively asymptomatic.

djb i am so sorry to hear there has been a change in your pouch condition..i am hoping it is nothing that cannot be remedied quickly with an anti inflamatory drug..and you can continue as you have up till now..you have been doing so well..
have you been having your pouch scoped your pouch every year ? if you were relatively asymptomatic it was good you just had it done..

this could be a eye opener for me as i have not gone to scope pouch for second year now thinking if i am doing okay why go through it..m i did not realize that with our chronic pouchitis it was necessary..

are we suppose to do that every year?

i really have my fingers crossed for you..please keep us updated..

rebe

quote:

have you been having your pouch scoped your pouch every year ?

I was scoped every year from 1992-2010 and then in 2010, when things did not look like this, we decided to go every 2 years. This was my first scope since July 2010. The inflammation is much worse than it was then. I posted pics from that study too but unfortunately they are no longer available as I had uploaded them to this board and they were part of a cleanup of posts.

My pouch specialist recently informed me, even prior to this year's scope, that we are back on the annual timetable because of the rectal cuff cancer threat. I recently started a thread about the rectal cuff cancer threat based on the information provided by my pouch specialist which he got from his mentor, Dr. Bo Shen of Cleveland Clinic.

quote:

Is he waiting for biopsy results?

Yes, no new meds until we get biopsy results, and certainly Entocort will be discussed at that time. I don't believe I have taken any oral steroid in the 20 years since my colon was removed, but looks like now I may have no choice.

quote:

Have you been feeling any different than you normally do like having increased frequency, stomach discomfort etc?

Other than the last 2 weeks, NO. In the last two weeks, I just felt like I was having a shaky rotation from xifaxin to augmentin, nothing unusual at all. That is what kind of bothers me. I have not really experienced a worsening in symptomology. The last 2 weeks even was business as usual as I went to depositions, court hearings, etc. Even after my scope yesterday I went to work and spent most of the day writing an opinion letter to an insurance company on whether they should not renew the policy of someone they are in litigation with.

I am very worried that an ulceration that looks like that can perforate the wall of my pouch. Does anyone know what symptoms I will experience if the pouch perforates and affluent starts leaking into my body?

quote:

I am very worried that an ulceration that looks like that can perforate the wall of my pouch. Does anyone know what symptoms I will experience if the pouch perforates and affluent starts leaking into my body?

I got this off off wiki, so according to this your jpouch would start to really hurt:

In case of intestinal perforation pain starts from the site of perforation, visceral, and then spreads all over the abdomen. In any case there is board like rigidity of abdomen, tenderness, and rebound tenderness. After sometime the abdomen becomes silent, heart sounds can be heard all over. Patient stops passing flatus and motion, abdomen is distended.

Hope they get your pouch back to normal quick.

Djb
I think if your gi were concerned about this he would have said something to you immediately after the scope. Try not to get too concerned ( I know easier said than done)about some of the terminology he used. When I had my scope I got very concerned regarding some if the terminology especially the term "friable" which means crumbling tissue. Try snd stay positive as I am certain he has something up his sleeve to help heal those ulcers.

quote:

I think if your gi were concerned about this he would have said something to you immediately after the scope.

We had a conversation after the scope but I was too groggy to remember what he said other than, "it looks a lot worse than last scope", which is obvious. I will speak to him next week. I actually feel pretty good but I am a bit anxious walking around with mega-ulcerations like that. Obviously, my regimen is not working, even though I feel good, and it has to be changed.

DJB,

Just an FYI..I am on the annual scope plan also. How I remember my retired GI, who had a jpouch and treated me for over 20 years, telling me the bonus is no more colonoscopies. I never thought I would require annual scopes after the surgery with the only difference being no prep .

I NEVER knew my prior GI had a jpouch until after he retired and I consulted him regarding MY surgery. To this day I swear if I was not forced to change GI docs out of necessity, I would probably not be where I am today with a jpouch.

The new GI I went to was pro surgery and pushing it after the supposed LGD that was found on a scope that never turned out to be dysplasia at all in the final colectomy. He assured me he had the best pathologist around for IBD at Yale when the second and third opinions done at other institutions came back as indefinite.

I would NOT get alarmed at the biopsy results in your cuff if they show anything disturbing along the line of dysplasia. If possible,I would make sure you are treated medically for a period of time and have them repeat biopsies after that.
Also, I think it is positive sign you are not feeling terrible.

Due to my chronic cuffitis, I am not only on the one year plan, but will most likely be a habitual user of canasa suppositories to avoid
a possible future rectal cancer.

quote:

I would NOT get alarmed at the biopsy results in your cuff if they show anything disturbing along the line of dysplasia. If possible,I would make sure you are treated medically for a period of time and have them repeat biopsies after that.

I am hoping there will be no dysplasia but if there is, this sounds like a plan as I am not ready to give up the pouch, especially since Entocort and biologics have never been attempted as methods of treatment.

Djb
Good luck. Please keep us posted as to your next steps. For what it's worth, since you are rmore a pro tham I am in at battling long terri pouchitis, I have been researching natural anti-inflammatories. I did ask our Gi for his approval on the first two and received it. I am trying the following:

Ginger tea
Turmeric
Cinnamon
Green tea
More onions and garlic as they are natural antibiotics
Leafy greens and fruits such as pineapple
Increased c d and b vitamins
Flax
Exercise
Probiotics
Walnuts, cod, Salmon snd more fish as well as omega 3 supplements.
Very limited carbs, sugars and grains

kjeane,

I had a long, frank, somewhat unsettling conversation with our pouch specialist today. I called him this morning and he called me back early this evening.

He told me he is very concerned by what he is seeing above the pouch more than what he is seeing in the pouch. He is ordering an MRI scan to be done on my entire ileum. He is concerned and also puzzled by the 4 cm swath of inflammation above the pouch, and then healthy tissue, and then more inflammation well above the pouch. He said the reason I have not noticed worsening symptomology with the pouch is that the real problems are above the pouch.

He mentioned something about "segmental thickening" of the bowel or something like that. He said he wants to see if the MRI will shed further light. I am sure that will also be done at Yale and he said something about having to drink Volumin, or something like that. for that study.

He said the biopsies should be back Thursday and we will discuss a possible aggressive treatment change at that time. So he asked me to call him Thursday and in the meantime, someone at Yale is going to call me to schedule this MRI test.

Does anyone know anything about segmental thickening or disfunction? Or about a small bowel MRI scan with volumin?

DJB,

I am really sorry to hear this news. I did some research and came up with the following regarding 'volume' imaging and MRI as I am not sure what volumin refers to and whether the below even applies to you or not. If he mentioned having to drink that, then below does not apply at all.

Volume Imaging

Imaging techniques in which NMR signals are gathered from the whole object volume to be imaged at once, with appropriate encoding pulse RF and gradient sequences to encode positions of the spins. Many sequential plane imaging techniques can be generalized to volume imaging, at least in principle. Advantages include potential improvement in signal to noise ratio by including signal from the whole volume at once; disadvantages include a bigger computational task for image reconstruction and longer image acquisition times (although the entire volume can be imaged from the one set of data). Also called simultaneous volume imaging.

My concern with long term antibiotics that I discussed with Dr. O today is that they are now linking this to increased cases of crohn's and colitis and I find it very coincidental that many people on the board who have been on long term antibiotics for pouchitis are now being diagnosed with crohns. I am not convinced they had crohn's all along as they are being told and were misdiagnosed at the time of their original surgeries.

I think the positive thing here is your symptoms are not severe. If you do have upper inflammation, it may be time for a treatment change and I am willing to bet that the treatment change will also clear up the pouch problems and ulcers.

We did not discuss entocort today but did talk about a lower level antibiotic because unbeknownst to me, augmentin is the top of the line antibiotic and I have been on this non-stop for a year. I always thought my surgeon was being conservative having me on this versus Cipro/flagyl etc. as they all had worse side effects. Imagine my surprise today when Dr. O told me that. He also told me he really wants me off antibiotics for at least a two week period of time if I can manage it to give my body a rest and also so the antibiotic does not loose it's effectiveness. He has a patient right now that he is experiencing this with, She has been on antibiotics for 4 months and they are no longer working.

We talked about pouch advancement surgery for the cuffitis and my concern is that with inflammation in my distal pouch, I would not be a candidate and he was not sure. He did tell me I should discuss this with my surgeon but to continue on the canasa and slowly wean off this over the next few months. He did say the rest of my pouch looks good except for some inflammation in the distal pouch and a small ulceration on the anastomosis that could be due to ischemia.
and I should not be worrying about losing my pouch (easy for him to say).

Why was none of this mentioned in your report?
The article below goes over bowel thickening causes. I would not get alarmed by looking at this as it covers a number of things, but does include crohn's, colitis and ischemia as reasons for bowel thickening.

Let me know what the biopsy results show and I am certain the MRI will provide more conclusive information for you. I know this is tough, but try not to get yourself too alarmed at this time. I hope Dr. O can provide a good treatment plan for you to get the inflammation under control. I totally trust him, so you are in good hands. I will be thinking of you and wishing you the best through this. Please keep me posted.

Ask him if he has treated other patients with what you are encountering now who have a jpouch.
I do know even if it turns out to be crohn's you can still save your pouch as my surgeon who is a jpouch expert and always thinks outside the box has told me in the past that a crohn's diagnosis does not automatically mean you would lose your pouch.

http://www.ajronline.org/content/176/5/1105.full

Hi kjeane

Thanks for the feedback. I did discuss Entocort with Dr. O and he said that option is on the table but he wants to see what the biopsies show and we will then decide on a treatment plan. He was not concerned by the ulcers in my distal pouch, was much more concerned about what is going on in the ileum because the pattern of inflammation does not make any sense. So I will do the MRI and we will see if it tells us anything.

I think he mentioned that I have to drink Volumin or Volamen with this procedure. It is similar to the barium that you have to drink but not exactly.

Me and you are in pretty much the same boat. I've had a lower pelvic mri, a lower abdomen ct scan, as well as a full abdomen ct scan, all within the last two months, the two ct scans within a month.

they saw that my bowel above my pouch as well as some on my right side was "thickened" more than it should be, which made them think I have crohn's. I haven't had a scan since my treatment, but I'm sure that'll be in my future once I'm tapered off the prednisone, and see if everything stays happy. I feel amazing now though, so hopefully that continues.

Good luck with your biopsies man, I'll let you know what I discuss with my GI about my situation.

Kjeane, thanks for posting the article on bowel thickening. That's been mentioned on my scans since '04, but no one's ever followed through. This will provide enough info. to intelligently (?) ask questions about it.

DJB, very sorry to hear about your report and the anxiety it is no doubt causing you. Will be awaiting your biopsy and MRI results. Good luck --

I was on Entocort for awhile because of chronic pouchitis. The antibiotics where keeping the pouchitis from getting worse, but not clearing it up. The Entocort worked great for me. My last scope (3rd one in a year) showed only minor inflammation. I hope it is an option for you and works as well as it did on me.

Karbear and everyone else thanks for the feedback. Entocort and other options will be discussed with my pouch specialist Thursday when he gets my biopsies back. We have to find something to get the inflammation down especially above the pouch, otherwise I will soon be running out of intestine. We took out the colon because there was so much inflammation I was going to get cancer or more likely it was going to perforate. We can't be removing part or all of my ileum for the same reasons. Because at some point you run out of intestine, or healthy intestine, and if that happens my future is not going to be too bright.

DJB,

I will be sending positive thoughts to you with regard to the MRI. Please keep us posted. I want to know how you make out and what he recommends for your treatment.

I am glad he is not concerned about the pouch. Possibly the long term antibiotic use has provided some inflammation in the upper intestines that is not crohn's related at all. I know the meds can be very irritating to the GI tract.

quote:

Possibly the long term antibiotic use has provided some inflammation in the upper intestines that is not crohn's related at all.

I have been thinking about this possibility a lot. I really do not have any regrets as far as the past because I was not functional without antibiotics, but going forward if I can't get off of them it could be a huge problem. Back in the 1990s my then pouch specialist told me, in response to my question about the dangers of long term antibiotic use, "you are the Guinea Pig." Well, he was right, and after 17 years of continuous antibiotics, we are finding out that there are some things wrong with the Guinea Pig.

Dear DJB,

I just wanted to add my voice of concern to the others. I'm sorry you have to go through this anxious period and hope that the doctors are able to come up with a non-surgical solution. Like the others, I'm encouraged that you're largely feeling well.

Best,

Ray C.

DJB,

these are the reports that are bothering me regarding antibiotic use and crohn's and colitis outbreaks. I spoke with our GI about this yesterday. I am so bothered by this that I am once again attempting to wean off the antibiotic I have been on for over a year. Coincidentally, although UC ran in my family (my dad had it), I did not develop it until I was on tetracycline for almost 2 years for mild acne.



http://www.ncbi.nlm.nih.gov/pubmed/7721242

http://www.reuters.com/article...dUSTRE78P4Z320110926

http://drbobseiler.com/wp-cont...le_09-43_demling.pdf

http://www.lacolon.com/blog/an...s-and-crohns-disease

I couldn't agree more. We do what we can to function at the time, and hope we are not shooting ourselves in the foot. Yes, we are the guinea pigs and that is not a very comfortable position. But, the alternative is to basically be so afraid to do anything, you are paralyzed. That is where I am with my Simponi treatment for my arthritis (which also keeps my pouch looking pretty darn good, by the way). But, I have no idea what the downside of biologics may be decades down the road. I'll just have to cross that bridge if I come to it.

My hope is that if the treatment of today turns out not to be the best one, tomorrow's treatment will replace it and be better. It is how we got past sulfasalazine and prednisone as the only treatments for IBD a generation ago. There always seems to be something on the horizon.

But, I have always been leery of long term antibiotic use, and specifically indiscriminate use of antibiotics (doctors who will prescribe antibiotics because their patients ask for them, when they know it is viral). Those doctors are just lazy because they don't want to deal with patients insisting.

Jan

Talked to my doctor today and the biopsies of the neoterminal ileum, pouch and rectal cuff all came back negative, just showing moderate inflammation.

My new treatment plan, starting today, is Entocort. He wants me to take it with the antibiotics for 2 weeks to give it a chance to kick in, then try to go off the antibiotics after 2 weeks, and see what happens.

He told me he is worried about the inflammation in the neoterminal ileum which is much worse than it was 2 years ago, and we will do an MRI in the next 2-3 weeks, to be compared with the CT Enterography that was done at St. Raphael's in 2008. What they are looking for is thickening of the bowel which will signify inflammation further north in the ileum of what they saw on the scope on June 22.

Does anyone know how long I will need to be on Entocort, assuming it is effective, to smack down the inflammation in these pics? I neglected to ask whether another scope may be in order in 3-6 months.

great to hear you have a treatment plan and the biopsies only showed inflammation! hope this therapy works for you to get you back to your normal state.

Hi DB,

I am glad you and your GI have a plan. I cannot answer your question about Entocort specifically, but a few years ago it really helped me turn a corner. I was on it for years. It is NOTHING like prednisone.

The only reason I stopped taking it was due to my CD diagnosis that came with RA and AS. Super fun. I went to Humira and it helped so much, I went off all my antibiotics and my Entocort.

I wish you luck.
~Tammy

Hey, thanks guys. I just started the Entocort. I think the generic name is Budesonide. They are little pink capsules and I take 3 of them, in one shot, in the morning. They are 3 mg capsules so the total "one shot" daily dosage is 9 mg. Hopefully they will work!!!!!!

I also got a call from the MRI scheduling people and I go in for the MRI on July 20. Hopefully, we will not see too much or any bowel thickening.

wow...9 mg sounds like a much smaller dose than the dosage of antibiotics you have been taking. I know steriods are more potent. I hope this helps get things under control. Have you asked our GI if you can take this long term with no dangerous side effects if you need it? Good luck with the MRI. I am glad you are starting the
medicine for a bit before the scan as that should tell if it is working.

quote:

Have you asked our GI if you can take this long term with no dangerous side effects if you need it?

Not yet, I think I will wait to see if it works before we get to that question. But a prior poster mentioned taking it for a few years with no problems.

9 mg does not sound like much of a dosage, but I read that it is a standard dosage.

I hope this works for you. Best wishes on the MRI also.

Thank goodness for the positive results! I hope the steroids work and the MRI comes back with good results. Its been all a bit much - particularly when you thought it was under control. Thinking about you and sending you some positive thoughts.

Hey guys thanks for the messages. I actually feel pretty decent. I am on Entocort for 4 days now and have not noticed any marked difference, so far, but my Doc said it may take 2 weeks to kick in. I had a late dinner last night and this led to some spotting overnight but nothing major.

Clicky, I am in Canada on vacation right now - I am in Montreal for the Jazz Festival. By the ways I am staying in a hotel right near the Jazz Festival grounds but even if I wasn't, there are like a million port-o-potties, so this event is a very "IBD Friendly" festival, if you will. Weather is also perfect, high of 80 degrees Fahrenheit during the day and low 60s at night.

DJBHusky and everyone that is going through all of this uncharted territory I hope the next treatment plan(s) will work better than the last.

I thought my cuffitis picture was bad until I saw DJB's, my cuffitis does look worse than your cuff but the rest of your pouch and appears to be swollen/inflamed a lot, compared to mine that is not, as well as the ulcerations and other different looking places. I don't understand how my cuffitis hurts and your pouchitis doesn't. It is what it is I guess. I hope your new regime will clear up everything, including your thickened intestines above your j-pouch.

kjeane and others reguarding cuffitis and Canasa.
My Mayo GI, Dr. Loftus, has instructed me to go from daily Canasa usage to every other day when I feel it isn't inflamed. It is UC and Canasa suppositories contain the medication most of us took at some time for UC, mesalamine. (I took it as Asacol.) After that I am to experiment with how often to take it to keep the inflammation away. For example he has some patients that take it twice a week as maintenance. I don't see this as a problem as long as it works. I don't know what other's with "chronic and acute", the pathologists findings, UC do, just what he told me. I believe you were worried about chronic cuffitis becoming cancerous kjeane. It is a risk as they are UC cells and I know you and I have had UC for a long time. If we can manage to keep our cuffs from being constantly inflamed and tested at least once a year I feel if the big C ever arrives it will be caught in time.

I know this is the Pouchitis forum and I like to read here every once in a while. The more I know about the problems that can occur the less I have to fear.

My Doc said he would send me the individual pics and when I get and post those, there will probably be better detail and perspective on what is going on both in and above the pouch. It's the area above the pouch that he is more concerned about.

The relative lack of pain that I have had is a bit of a puzzle. Jan Dollar and others have theorized that i have had the same disease, likely Crohn's, all along, but when I had what was diagnosed as UC for 20 years, the symptoms were radically different. Much more significant pain and significant bleeding for the better part of 20 years, until I deteriorated badly at the end. In over 17 years treating pouchitis, I have never had any bleeding and I have never had the same level of pain that I had with the colonic inflammation. I have also not had cuffitis or symptoms of cuffitis, to my knowledge. However my Doctor said we all have inflammation in the rectal cuff, it ranges from microscopic to very obvious.

I attached picturs copied and scaned so hope you can see the difference. Notice the staples that are visable in the red cuffitis cuff. See how different the pouch looks from DBJHusky's pouch shots.

Hey DJB! Hope you had a great time in Montreal and didn't need to spend too much time in the porta potties ! Montreal is great! I am in Calgary near the Rockies! You deserved a good holiday after all that worry!

Hey guys! I had a great vacation and am posting the individual pics my Doctor sent me which are much more detailed than the group photo I posted earlier in the thread.

The 1st one is the pouch outlet. Yikes!

This is the one that has him concerned, inflammation in neoterminal ileum 20 cm proximal to pouch.

This one is of the pouch inlet.