Great update and a question

Try not to focus too much on that. Yes, 13 years of constant struggle and lack of sleep takes its toll, so do not expect to recover in a matter of weeks. Your body has been in overdrive for a very long time and only just recently has been able to fully relax, so to speak. So, give yourself a few months to readjust to being without pain and suffering. You could still have some residual pouchitis, but I am thinking it is more about recovery from the chronic drain. It takes time.

Jan

Jan, thanks so much. It's so hard to gauge what would be a reasonable expectation. I wasn't expecting much energy right out of the gate but I am hoping hubby doesn't get frustrated with me still being tired. I mean he's always been so patient, but it's hard for him to understand at the same time.

Hearing that a few months isn't unreasonable gives me "mental" permission to keep rolling with it and wait for my body to catch up.

Kia,

I also have chronic pouchitis (pretty much for two years now). I treat it on and off with antibiotics and try very hard to get breaks from the antibiotics in between (sometimes for several weeks at most). I can best describe the exhaustion I feel from pouchitis as having very sore muscles (tender to t he touch) and an achy feeling throughout my body that is there all the time. It is a different type of exhaustion other than just feeling tired. I can best describe it as a feeling of being drained that no matter how much sleep I get, my body still feels achy and worn down like having the flu. I am not sure if this is just the norm with low level chronic pouchitis or not. I used to think it was the antibiotics, but even when off them I still experience these feelings.

In your case, if you have really cleared the pouchitis, it probably will take some time to feel more like yourself again. I am amazed you were able to function for that long with undiagnosed pouchitis,

The odd thing about this is I that never had any of these symptoms when I had my colon no matter how bad my UC flare was.

I have consistent low grade "simmering pouchitis" for 18 years now and I have not noticed that it effects my energy levels at all. If you look at my latest pouch pics posted as attachments to the posts below, they look nasty, yet I feel pretty good (see attachments to the 2 posts below this one).

I am the only one who has ever posted his pouch pics so I really don't know whether anyone else's pouchitis looks the same or different. I have seen Cleveland Clinic pics of much worse pouchitis than what I have so I know it can be worse, but I am still curious as to what energy-sapping pouchitis looks like. You don't need to post your pics. Just tell me if it looks the same or worse, that is all the info I need to know.

see the attached- Pouch outlet

Pouch inlet- this is where the narrowing is.

I would think there would be a big difference between pouchitis that has been kept under control and pouchitis that has been untreated for 13 years. Chronic inflamation can cause all sorts of health problems and I would suspect that 13 years of untreated pouchitis does not resolve overnight. Tiredness and low energy would be a symptom as the body is trying the heal itself no matter what the pouch photos are showing.

kathy

Perhaps I am missing something here. In 13 years there were no scopes that indicated pouchitis and inflammation such that treatment was warranted? It is true that my pouchitis has been aggressively treated for a long time resulting in the "simmering state", but regardless of that I still have a great deal of inflammation and it is not fatiguing me as described by the OP. I am not sure why I am getting a pass on fatigue. I am just trying to figure it out since this seems to be somewhat common with others who have chronic pouchitis.

Of course, I cannot know for sure but, this also can be yet another instance that shows how we each individually respond as individuals. It is well documented in the medical literature that the degree of inflammation often does not correlate with symptoms. People with minor inflammation can suffer with severe symptoms and those with major inflammation can be asymptomatic. So, the fact that one person may not feel the fatigue of chronic pouchitis, is really a blessing. Or, it may be that after nearly two decades of living with it, you really don't know how much more energy you might have if it were not for this simmering level of inflammation. We get used to it I think. Plus, your body secretes hormones to help deal with it.

Just like I have gotten used to a constant level of pain in my joints from my arthritis. During the rare times when I am pain free, then I really can notice the difference. Otherwise, I am "treading water" so to speak.

Jan

CT, unfortunately I don't have the pictures or I would be happy to post them. I asked the GI if she could describe how bad it was, but she told me lab results didn't provide that information. Oh well.

As for why it was undiagnosed, I went to two specialists in that 13 years who both told me it was damage due to a tear during vaginal birth. One did a digital exam and with some sort of scope just in the rectum and confirmed muscle damage. I was told it was due to the tear and was told to take fiber, even after I did so for 3 weeks and couldn't take it anymore. No other options or suggestions were offered.

That specialist never suggested a full scope, never mentioned pouchitis (I never heard of it before this forum). That was the end of that and I assumed nothing could be done.

I do take some responsibility for not researching on my own sooner and for avoiding full scopes due to prior excruciating exams bc I was always in full flare and told sedation isn't necessary bc it shouldn't hurt. I was not my own best advocate so I lost more time than I would have otherwise.

Kia,

That's amazing that you had no scopes in 13 years, but as the saying goes, better late than never. The thing is, if I go off my meds for a week, I am a total basket case physically, and I go back on and feel fine almost immediately.

Kia, the real critical scope pics for you will be the next one. The one that you have after one year of treatment, or perhaps one year being symptom free.

Jan,

Do you think my scope pics show minor inflammation or more along the lines of moderate? What you said about the body adjusting to adapt or mute pain levels, by secretion of hormones, is something I have wondered about and something I also worry about. This is because pain is the body's way of telling you something is wrong. If I am going to perforate because one of those pouch ulcers punches through the pouch, I would really prefer to get a signal from my body that it is about to happen, so I can do something about it.

And to clarify, a full scope was never suggested during that 13 years. I am referring to my UC days. It was my therapist who encouraged me to insist on sedation bc being in pain for an exam is inexcusable....her words.

My current GI just so happened to be very willing to sedate me, esp after she saw the condition of my skin and how painful the rectal scope exam was.

CT, I actually have a follow up scope the beginning of May. I'm going to ask for pics, if possible.

quote:

CT, I actually have a follow up scope the beginning of May. I'm going to ask for pics, if possible.

OK, you don't need to post them if you don't want to, but after you look at them, I would be curious as to how they compare to mine. Let me know. Good luck with it.

BTW I always get sedated for the scope and never had any problem with my pouchoscopies, which I have had annually every year with the exception of going into a 2 year cycle 2010-2012 which as you can see was a mistake. My GI put me back on the annual cycle after observing these pics taken in June of 2012.

quote:

I do take some responsibility for not researching on my own sooner and for avoiding full scopes due to prior excruciating exams bc I was always in full flare and told sedation isn't necessary bc it shouldn't hurt. I was not my own best advocate so I lost more time than I would have otherwise.

I don't agree with your assessment of yourself. How would you know what to research? Your doctor(s) should have known to schedule a scoping. And the fact that you were in excrutiating pain and they were telling you that it 'shouldn't' hurt is rather inexcusable. Ask those doctors to take a blow torch to their arse and then go in for an examination. I'll bet they'll change their tunes. Of course, you didn't know what to do in that case either since your doctors were telling you that it 'shouldn't' hurt. You might have sought another opinion for another doctor. The problem with being our own advocate is that we often don't have all the knowledge that we could have.

Hopefully you aren't beating yourself up too much over this.

kathy

I would say it was moderate, at least. You can compare to the images in this Cleveland Clinic article.
http://www.dept-med.pitt.edu/g...eadings/shen2005.pdf

Mia, again I am confused. When you say that your GI said that you cannot rate the level of inflammation based on lab values, I get that. But, since your GI did actually scope you and see enough to diagnose pouchitis, prescribe 2 months worth of antibiotics, and have you return for a follow up scope, I really do think she had an idea of the degree of inflammation in there. I don't get why she was unwilling to give you her opinion. After all, she was the one who saw it.

One of the reasons I prefer not to be sedated is so I can see with my own eyes what is in there. Since I usually don't have much going on other than the occasional ulcer, inflammatory polyp, some cuffitis and minor pouch inflammation here and there, it really is not painful for me. Plus, I don't have strictures to add to the trauma.

CT, in regard to worrying about feeling pain and possible perforation, that really is not an issue, since there are no pain receptors in the intestines. Anybody would perforate without feeling it. What we do feel is cramping from irritation and spasms, stretching from gas, that sort of thing. That is why toxic megacolon is such a life threatening thing. You can perforate at any time without knowing it. It is only after infection/peritonitis sets up that you get symptoms. Believe me, stress hormones would not let you ignore it. Your belly would swell up like a watermelon, get hard as a board, and you'll go into shock.

Jan

P.S. Oops! I forgot to post the link to the article! I put it in there for you.

Jan, that's very interesting, I did not know that. I had always assumed that the acidity from the stool leaking through the perforated pouch into the peritoneal cavity would cause a painful, or at least noticeable event. I was told by my surgeon who examined my dysplasia-laden colon after its removal that it was close to perforating. This was a bit of a surprise to me. I was not in good shape prior to the colectomy and in some pain, but did not feel like my colon was about to perforate at the time. I did not feel like I was near death or anything like that. It just kind of felt like the worse flare of UC that I had had and it continued flaring, although I was taking 60 mg Prednisone.

I wonder whether a close to perforated colon means I could be a candidate for a perforated pouch someday? I have now had pouchitis almost as long as I had UC (which was 20 years). The UC was much worse, no doubt, but this chronic inflammation has me concerned. And especially those punched out ulcers in the pouch outlet which were not there in 2010.

No, I would not say the severe UC is any sort of an omen. Mine was extraordinarily bad too, and my appendix was near bursting. But, the chronic pouchitis might be a factor. Chronic inflammation anywhere in the gut can lead to perforation. Hence, the reason to keep it under control.

I posted the link to that article in my earlier post. I forgot to put it in there before.

Jan

quote:

I would say it was moderate, at least. You can compare to the images in this Cleveland Clinic article.
http://www.dept-med.pitt.edu/g...eadings/shen2005.pdf

Yes, I had seen this article previously and those were the pics I was referring to when I mentioned I had seen CC pics of pouchitis that were worse than mine. I am somewhere between pic B (mild) and pic C (severe). Those are actually the only pouchitis photos I have seen, other than my own, which is why I had posted my pics and hoped for feedback from others. I was a bit surprised, and also disappointed, that despite there being many chronic pouchitis sufferers on this board, I never got any feedback in terms of comparing their pics to mine. I do remember that someone posted that I had ruined their lunch by posting my pouchitis scope pics of 2010.

They were probably just kidding. All you need to do is turn on the TV to ruin your lunch!

I don't get images from my scopes, just my memory.

Jan

CT, I am not the least bit shy about posting pouch pics, unless we're not supposed to do that here. I'm guessing its fine since you did it. If I can get them from either or both scopes, I'll post them.

Kathy, thank you for your kind words. I agree mostly, but its hard not to kick myself a bit, too.

Jan, yes, I agree with you. This is one of those little things about her I'm not thrilled about. She's rather abrupt, diagnoses, moves on and gives little opportunity for additional convo or thinking outside the box. She's very much a scientific/medical mind and doesn't think much beyond that. Not much bedside manner, except she was compassionate about the sedation need. It's not a perfect situation, but she got down to the important issue and very quickly.

At my next appt I will press for more of an opinion and the pictures. I will say she's a rather strong personality and it might take some pressing. Not too fond of that, but I know I shouldn't let my questions go unanswered.

quote:

CT, I am not the least bit shy about posting pouch pics, unless we're not supposed to do that here. I'm guessing its fine since you did it. If I can get them from either or both scopes, I'll post them.

I posted them in 2010 and 2012, and I suspect nobody else ever did because they don't know how to redact their pics to protect their privacy, or otherwise they are scared to post them, or perhaps believe that it may be against the rules to do so, as you do. Maybe they are just ashamed or disgusted by them. I really have no clue, but I am the only person who has ever done it. To those who haven't, I say this: information is power and lack of information is weakness.

I had my GI redact my personal identifying information from the pics before I posted them, but there are ways to do this on your own as well. My GI then emailed me the pics and I uploaded them to the board.

There would be no attachment function if you were not allowed to upload pics.

I remember a few years ago some young stud posted pics of himself shirtless and asked everyone what they thought of his body. Actually, he had a pretty good body, but he was like 23 and I was like so what, I had a good body when I was 23 too.

I am not pressuring anyone to do anything they don't want to, but my personal opinion is that it is in everyone's interest to share info and PICS SPEAK LOUDER THAN WORDS. Some people who are posting on the board are not the greatest communicators or writers, and it would serve their interests much better if they posted pics of the condition they are talking about (this is not directed at you Kia and is just meant to be a comment in general).

Anyway, by my posting of my pics, and Jan's posting of the CC pics, you now know what mild, moderate and severe pouchitis are all supposed to look like, and where you may potentially fall in that spectrum. If we had not posted the pics, you would not know.

Kia, If you want any reports or photos from your records and your doctor gives you grief about it, you don't need to make a big deal about it. You are entitled to your records. Just go to the secretary ask to sign a release of information form to get a copy of your records (same one you sign to have records sent to another doctor or if you are in a lawsuit). You just indicate yourself as recipient. You may have to pay for copying costs. The doctor does not need to give permission. She only owns the originals, but you have rights of access.

Jan

Thank you, Jan. Will do.

Ok, so I am having some butt burn now after a BM. I'm not uncomfortable otherwise, but any little thing concerns me that pouchitis might creep back.

The doc said to call if I show any symptoms and she would try suppositories next rather than going back on Flagyl.

I don't know if I should call yet. I just don't want it to get away from me, esp since we are planning a vacation at the beginning of April.

Should I chill out and watch it a bit longer?

If pouchitis creeps back on you, suppositories are unlikely to do much, unless she is seeing inflammation mostly in your rectal cuff. Most GIs do not like patients staying on antibiotics for more than 2 weeks, but if the antibiotics are rotated and used carefully, they can be taken chronically, and I have been doing it for 18 years.

If butt burn was something you always had over the 13 years, it is hard to say whether it means anything or not. You know your body better than we do. I have had butt burn from eating too many jalapeno peppers and drinking hard liquor, and not had it at all with pouchitis after going off antibiotics or flaring at the end of a rotation.

Ah, it's all such a crap shoot, isn't? No pun intended.

I've had the burn for so many years, I don't even know if it would be normal for me, sans pouchitis. I can't even remember if I had it in the 10 years prior with my pouch.

The only variation in these 13 years is the degree of burn. I only have pin pointed, for certain, that some spices cause lethal burn.

For now, I think I'll add the Immodium back as my frequency is increasing a little. Maybe it was too much to discontinue that.

I am having a scope next month for my chronic pouchitis and cuffitis. I will post pics. CT, can you provide the means how you do it? I will ask my GI to remove my personal information also. I think if anyone is afraid to leave them on long term for personal concerns we can always delete the posts after giving others on the board a bit of time to review the pictures.

quote:

CT, can you provide the means how you do it?

I just ask my GI (who is also your GI) to email me the pics. I can't remember if he redacted my personal info or whether I did on the report, but the pics he emailed may have already come redacted. He is pretty good about doing this, but it usually takes him up to 2 weeks post procedure.

Once I get the emailed pics, I save them in the "My Pictures" folder of my computer which runs Windows Vista. I then click on the Attachment feature of the Board (when you click on the edit button, it says "Add Attachment" on the lower left side of the posting screen) which enables you to browse your computer and upload whatever pics you want. Like I mentioned, in the past some people have uploaded pics of themselves, usually as Avatars. My own Avatar for a while was a pic of me taken in the Bahamas. Although you really could not see that it was me.

Our Doc takes very detailed pics and he seems to focus in on all of the problem areas and each pic he sends describes the area of the pouch or ileum being viewed. I think he sent me 8 or so pics. He also took pics of the neoterminal ileum, but there is not a lot to see there, just some minor inflammation.

If the pics are properly redacted of personal identifying info like name, date of birth, social security number etc., I am not sure why anyone would be scared to leave the pics up permanently, or for as long as old posts are left up before being cleaned out. I can't imagine how anyone could be identified by a pic of their inflamed pouch and nothing more.

Doing much better today. I'm thinking the raisin bran mini muffins I went to town on were also a bad idea. Bran doesn't usually agree with me, but I ate a few of the muffins the day before and all was fine. *Sigh* Must remember all things in moderation. So grateful for another good day today, though!!!!