The thing is that it is pretty much impossible to prove a negative when it comes to Crohn's. All they can say is that there is not definitive evidence, YET! So, that leaves you in limbo with probably not Crohn's, most likely UC, blah, blah, blah.

So, how you proceed depends on how much you believe that things will stay as they are, with a presumption of a diagnosis of UC. Unfortunately, the doctors do not have a crystal ball to indicate the future. Perhaps the past 25 years without any sort of perianal disease is a testament to a UC diagnosis, and your current state of misery is mostly due to surgical complications (such as ischemia and stricture), NOT IBD complications.

I certainly feel your pain since you cannot get any sort of assurance as to the best route to take. Of course, if opting for ileostomy was easy, I am sure you would have done so months ago. I suppose that this is the decision only you can make, and nothing any of us can say really matters, because you are the one who has to live with it.

For what it is worth, I probably would attempt pouch advancement. But, I have not lived the year you have lived, so my opinion is purely academic. Nobody knows how they would react, until they are actually walking in the same shoes.

I'm sorry I can't help you more.

Jan

Thanks Jan. I am just so afraid to have more surgery that may ultimately be unsuccessful and then I have to have the pouch out and rectal area stitched up anyway. I am also scared that I may fall in the 20% unsuccessful rate even if I do not have crohn's. I am just not ready to deal with a permanent ostomy in any way shape or form and that is why I have been dragging my feet on this advancement surgery, but who am I kidding? I can go on living on antibiotics and function somewhat, but the straining to empty my pouch while on them surely will not be good for my pouch in the long run and the anal stenosis is not a good thing.

jeane.. I am under belief that right now they can never ever seem to rule out crohns definitely. These things are not black and white... rather a murky gray. They do their best with the knowledge and statistics they have.. but that is all they can do. There simply are no guarantees. Heck..with 10 years of so-called definitive UC diagnosis - pre surgery, after surgery, jpouch, etc.. at seven months after getting my jpouch removed and still having some gut problems they still run all sorts of tests to re-check on crohns.

So all you can do is make the decision that is best for you and your lifestyle with the knowledge you and trusted doctors give you. And as one of my doctors told me last week.. if there is no definitive answer to something. Then that means there is no right choice which also means there is no wrong choice.

Just curious.. why such a strong viewpoint against a permanant ileostomy? I guess I just wonder where would you be emotionally should challenges arise post pouch advancement surgery?

So sorry you are still going through all of this.

That is a great question Liz. I have been fighting this for a long time to avoid a perm ostomy but I'm now at the point of 'do I want to risk more surgery that could also potentially fail' and then it would mean more surgery to yank the pouch in the end. I'm going to be 50 this year and I'm healthy other than this disease. I have already lost five years going on six since my first diagnosis of low grade dysplasia (another false positive) when this nightmare started and I really do not want to lose another couple more with surgeries that may not solve my problem in the end. I am finally warming up to the idea of a perm ostomy as it may be a reality for me moving forward and I just hope to feel better and get on with living my life. I realize the medical world is not exact, but with all I have been through (and a surgery that was really mot necessary) I am tainted and have a very hard time trusting any so called medicsl expert any longer.

jeane.. I can understand how you feel. I believe some my problems were caused by my initial surgeons. But that is in the past.

For me.. once I had my jpouch diverted with a temp loop ileo(that was pretty much mandatory because I was so sick) I ended up having to make a decision as to redo the pouch or remove it and have perm ileo. Dr. Remzi told me he wouldn't know for sure until he "got in there" if redo the pouch meant taking out parts and putting it back together OR completely removing it and creating an entire new one. And either way.. no one could say if pouchitis and cuffitis would still be happen. Even though he would've removed the mechanical problems which were causing perm. pouchitis and cuffitis.. there are still so many other reasons to get pouchitis and cuffitis.

So in my case.. after a long 18months... you know what I chose.. the perm ileo. Because I too am around your age.. and I couldn't see myself carrying on with more what ifs.. and potential failures.

And yes, the surgery was big, and I am still having wound healing problems. BUT,.. I am still very happy with my choice.

Thank you Liz. I really appreciate your honesty and support. I am sure Dr Remzi is going to tell me the same thing.

Jeane and Liz -

I am faced with the same dilemma and looking for the answers are difficult! What do you do? My one year anniversary was yesterday from the initial surgery! I wonder if it is too soon to give this up. I am tired of thinking and talking about it. I need answers and no one can give me them. I have been going monthly to my GI. I had to promise her that I would do my steroidal suppositories daily until I see her again. My surgeon has told me he can do this operation because he trained at the Cleveland Clinic.

My question is can we ever heal the disease that is still there? No one can give me the answers. How long do you suffer and if it is Crohn's disease what next?

Roberta

I'm sorry you are all going through this. From what I've learned, on the site, Dr. Remzi sounds like a great straight talking surgeon.

Roberta,are you using the suppositories for pouchitis and/or cuffitis? Has she had you use Canasa? It is very expensive but is what I use to treat my chronic cuffitis.

Both times my cuffitis was biopsied, local lab and Mayo lab, the pathology reports came back as definitely UC, including a long description. No one has ever mentioned crohns. I missed the link of Jan's discussing the possibility of crohns causing cuffitis

I'm in my 50's but older than you all. I had the surgeries because of my age and not wanting to try biologics. The cancer risk was getting worse the longer I had UC and I had nasty diverticulitis pan colon as well. Instead of an improved life mine's much worse. I'm on disability for my on going problems and constant pain from this plus my fibromyalgia and neuropathy that got worse after the surgeries. The social security administration has classified me as not likely to get better.

I've considered a perm ileo as I've been suffering with my UC and diverticulitis flare from hell leading to the surgery for 3 years. I don't have that many years left and I want to get some quality of life back. I want to enjoy my grandchildren. I'm also not handling this well mentally.

I have daily pain that requires I take narcotic pain medication and even with them there is still pain. They say it's caused by IPS, adhesions and cuffitis when it's flaring. I think if I did have the surgery the IPS and adhesion pain would still be there. I feel doomed.

I feel for you all. Our surgeries did not turn out expected so how can we anticipate what will happen with more surgery. I understand why you have not made a decision jeane.

Liz, I hope everything is healed soon!

te.. thx. nothings healing here. Back to CC on friday. remzis office pretty much ignoring me again. But shen wants to see me. No appt needed even. He told me just to go there and have him paged. what a wonderful doctor. Now I just have to psyche myself up to sit my unbelievable painful and bruised arse in a car to get there.. without pain drugs. (on a side note - was thinking if someone saw my bruised body other than my CC docs.. I think my hubby would get arrested for domestic violence!)

RLC. just because someone trained at CC doesn't mean SQUAT. my first surgeon did his fellowship at CC... but for whatever reason, my pouch was too large and too long of an efferent limb. Training at CC means not a whole lot. Experience and successfull outcomes is what you want to look for.

Also rlc. have you had second opinions from other surgeons, your gi docs, or anyone. Seems you have been suffering a long time and it sure is time for some answers and better quality of life for you.

My surgeon didn't tell me he trained at CC I found it out when checking him out. Every since a Neurosurgeon killed my friend's husband during a simple biopsy I look them all up. On the state board etc. Even though my GI and Internist recommended him I still looked him up.

The Mayo GI, that did my last flex scope, said I had the best looking pouch he'd seen in 5 years, until he got to the cuffitis. He asked if I'd had the surgery at Mayo. Besides being well built I should only have 4 BM's a day, when my cuffitis (UC) gets under control. I'm still waiting to hit the 4 a day level 9 months later. Knowing my pain has nothing to do with the construction is one more thing to check off as not the problem.

Liz, I think it is cruel and inhumane to make you travel by car without pain medication.

Liz I know about the training piece however, surgeon wouldn't recommend me going to CC for the surgery (when I asked) because he can do that type of surgery to get rid of what is still diseased. I should have said that on my last post.
TEMarie as far as second opinions I go to my GI every month for checkups. She believes I would be much better with the surgery. The last scope I looked better so, she wanted me to promise that I do the steroidal suppositories every day until I see her on the 13th of this month. I do have Canasa as well but they didn't really work for me.
As far as second opinion I had it when I was first dx in Boston because I couldn't get UC under control and the hospital in Providence shipped me up there. I haven't got a 2nd opinion on the j pouch not too many experienced with this and really don't trust anyone else other than going to CC.
My problem is it has been too soon (just a year for the lst surgery). My take down was in 4/30/2012. How long to you give the body time to adjust and heal? That is my dilemma before I decide on this surgery.

Roberta

Lia,

I am sorry for your pain. It is so frustrating to be ignored by your surgeon's office. I know that feeling only to well. Hopefully, for you they are just very busy and have gotten back to you since this post. I so feel for you as you have been through so much and I know you are just looking for the end in sight and after having the surgeries to get better and then having more complications must be frustrating. I hope you are rounding the corner soon and have gotten a response from Remzi's office.


RLC,
I am not saying your situation will be like mine, but had my takedown just shy of two years ago and I am still struggling with the same issues you are. After a year, I feel if we were going to have luck with this surgery, it would have happened.

I have tried everything for my chronic cuffitis from canasa and anucort suppositories to oral pentasa. I just have no luck at all. I am currently in another flare of pouchitis and started cipro again. My issue I believe is mechanical in that my stricture at the anastomosis causes fecal stasis on the bottom of my pouch therefore causing the pouchitis. As far as the cuffitis goes, I am not sure what is causing this issue, but I believe it may be due to ischemia from surgical trauma. I never had anal anal issues before this surgery as I do now.

I am also being recommended for pouch advancement and have been fighting it,but I think in the end I will end up there. I am seeing my GI tomorrow and will again discuss. I am tired of trying to do all the right things and still suffering with this disease in ways I never was prior to jpouch surgery. I never thought I would welcome an ostomy as much as I am now.

I am afraid to have the advancement surgery (based upon my bad luck with the original jpouch surgery) and potentially waste another couple of years of life with additional pain, scarring and three month loop ostomy (horrid experience) when I know the perm ostomy will probably solve most of my issues and allow me to get on with my life.

While my problems were not the same as yours, primarily incontinence made worse by pouchitis. I lived through 18 months with the J pouch before having it disconnected. I actually lived a relatively active life, traveled but with a lot of hassles though no pain. I am very happy I made the move to the end ileo. No solution is perfect but as I look back on this it seems that the more complicated a solution the more possibility of problems. These surgeries are not to be taken lightly even if done by very competent surgeons they take a lot "out of you" I have made lots of wrong decisions over the course of the last few years, including just getting the pouch disconnected rather than having it excised. I had it excised about six months after disconnection and after about three months things are good. I was fortunate in having had a pretty well behaved loop ileo so I had little fear of life with an end ileo which has been even better behaved.

Thank you for sharing. What made you decide to excise the pouch and how was that surgery?

rlc I surely think a year is way too long to be miserable. I also believe you deserve to get a 2nd opinion, particularly when you say you know there aren't too many coctors experienced with jpouches. It just seems there are so many potential issues that can be causing terrible symptoms, that I wouldn't trust anyone other than CC or maybe Mayo to really get to the cause of the symptoms. ESPECIALLY, if you are considering surgery. Seems you should really know what is going on from the gurus.

I was fortunate that I am impatient. I only waited 5months with my local GI who thought he was a jpouch guru until I got myself to Dr. Shen. Gosh knows where I'd be know, if I hadn't done that. One of the reasons I stick around this board is to encourage others to get help for their jpouches rather than continue to suffer or just believe that their local docs know everything about jpouches.I think there are a lot of docs out there "overpracticing" with their limited knowledge of jpouches.

Also, I personally believe that once I got that "mutant jpouch organ" out of my body that my entire health improved. Yes there are issues with such a massive surgery, and yes I am still suffering wound healing complications. But I still would take this situation 100x over my misbehaving jpouch.

And for you ladies who have this horrid fear of ileostomies... I know you have heard this but I will say it again... an end ileo is nothing like a loop ileo. I can honestly say I have had one little skin problem in one year with my perm. ileo. And even that didn't stop me from doing anything I wanted to do.

Roberta, I'm sorry I don't understand what is still diseased that your surgeon didn't remove during the j-pouch surgeries? Are you referring to the little bit of rectum left at the rectal stump, the cells that cause cuffitis? If not that what?

My GI trained at Mayo's and he's referred me there, the first time years ago when I wanted a second opinion and last year when the cuffitis (UC) wasn't going away. I had tried both Anucort and Canassa at that time. My specialist GI at Mayo put me on Canassa and said to take it until I went into remission and then how to take it during remission.

That's why I'm puzzled that he won't refer you to CC. I think he is probably well trained as my surgeon was there too. I am not going to go back for any surgery without a 2nd j-pouch surgeon's opinion. No one is suggesting surgery for me either.

What is your GI treating you for? Cuffitis, Pouchitis, Stricture, Fissure or a combination of any of these?

quote:

Thank you for sharing. What made you decide to excise the pouch and how was that surgery?

I saw my life contracting and that I was adapting to a contracted life, that is I was organizing my life around the J pouch's requirements not what I wanted to do. On one hand it is wonderful that humans are so adaptable and this has its place, we often have to accept "our lot" in life. On the other it can be insidious and self limiting that we adapt to something, in this case the J pouch, that we can change. I wish the J pouch had worked for me it didnt and I moved forward.

The excision surgery was 4-5 hours it was done laparoscopically. Sometimes the pouch comes out easily but naturally I had a lot of adhesions. I opted to leave my anus intact (not sure with chrons if this is a good idea but I had UC) and that decision made the recovery much easier. I was in the hospital 5 days and now about 2.75 months later I am very active, I can do hard physical labor and hike without problem, my iloesotomy behaves well, I eat everything (I do chew well). Without doubt the surgeries I have had over the 3 years have definitely taken a toll on my 60 year old body and I am working to regain "where I was" which will probably never happen.

Thank you for you take in this. I wish I had the courage to yank it now. I realize the people near to me are affected by the major changes this surgery has caused me as well as my personality change from it. I am far from the person I was pre surgery and it is sad.

Thanks for explaining this to us Chiromaster. I've never seen a first person account of the details. I didn't know they let you keep the anus intact either. The Barbie Butt discussions I've read aren't scary or anything I just thought it would be weird for me, don't know why.

I didn't realize they could take it out lapro with all of my adhesions and I definately do not want another open surgery. It would be nice if they could get rid of my adhesions at the same time, if I choose to dump my pouch.

I'm a few years behind you at 57, and am encouraged that you are doing so well. I am tired of living like this.

I hear you about the other people in our lives jeane. This has affected me with depression, anxiety and PTSD. If I could get rid of those problems by going to a perm ileo I would do it in a minute. I never quite know what to expect from these surgeries.

TEMarie,

I get like this all the time with the anxiety and depression and insommia also especially when my pouch is acting up and then two days on cipro and I am almost like a new person. I am just so stubborn and do not want to be on long term cipro, but it just seems to work for me so guess until it does not, I will just keep relying on it. The cuffitis is a complete different story as no meds really seem to get it in total remission.

I just hope I do not get ligament problems from the cipro as that is my biggest fear from long term use.

I have never heard of anyone keeping the anus. I never even asked my surgeon about it. I know he is the best and did what he deemed was appropriate.

Mine was definitely an open surgery - front and back! I had four previous open abdominal ones - all for the pouch.. and I know my surgeon is very conservative .. so absolutely open it was.

And te.. the first few sentences of my op report for the jpouch excision surgery actually say... major lysis of adhesions. And I know that to be true.. because a lot of the random pains I was having after eating when my jpouch was intact but disconnected went away.

Interesting what chiro said about adapting. Heck, I even ran three half marathons after my jpouch was disconnected and I had a loop ileo. Adapt for sure, but then I realized the way I was living my life to accomodate it trying to avoid the biggie surgery and the pain I was enduring was not the way I wanted to live my life. I guess I really followed what chiro was saying.."accept our lot and moved forward." I banked on it getting me a far better quality of life. And it did.

Liz,
I had 2 abdominal surgeries before the j-pouch surgeries. In the surgeon's surgery notes from the first surgery he mentions a lot of adhesions from the prior surgeries. Then after the 2 j-pouch related surgeries I had a incisional hernia surgery. The incision was opened 3 times in 8 months. Surgery 1 created it, during take down they removed a large abscess under the incision, which had to heal open and I had a big hole there I had to pack several times a day. Then I had an incisional hernia surgery that he had to open completely up again because it was a large hernia - per the doctor.

So one of my major concerns is that I will still have all of the pain if I go to a permanent ileo so why do it. I need to find out more information regarding this. It would get rid of the cuffitis. I have recurring c-diff infections too.

It's great that you are able to exercise and run in the half marathons. I would just like to be able to take long walks. I have other health problems including painful fibromyalgia, and neuropathy in both feet.

I am stuck in a body wracked with pain on pain medication that only dulls, so am perpetually depressed. I don't see how to move forward as I can't accept my entire lot.

TE Marie -

It is the rectum that is left that was completely diseased (I have pictures) which is cuffitis. My pouch as they have said always looks good but I do have some inflammation at times with it. I have been on canassa, anucort on and off. Don't like my side effects from them. I find my symptoms become worse around when I would have had my monthly. I am 49 years old and the surgery gave me early menopause, as well!

jeane my symptoms have been exactly what you have been fighting with the cuffitis and pouchitis. I,too, had very bad experience with take down (not from surgery) just my body not starting up (NG tube) and then not shutting down 20 x 30 times for months (picc line for nutrition) so my decision doesn't come lightly for this pouch advancement or do I just opt for ileostomy and call it a day.

What to do....what to do....?!

Roberta

Roberta,

That's what I thought you might be taking about. It took me 3-4 months on canasa to get into remission and I then took it every other night and was to take it several times a week to keep it in remission and admit I slacked off on that so boom it came back.

It is a very delicate procedure that can make us incontinent. The reason why they leave 2 cm, in my case, at the rectal stump is to prevent incontinence. They can scrape the mucosa and hand sew the j-pouch to the rectal stump, but there is no guarantee the UC cells won't grow back. Or they can sew it directly without keeping the 2 cm at all. If I decide to have pouch advancement surgery I am not going to my CC trained surgeon as he does not have much experience in doing the surgery. Your surgeon may have experience. I will go to Mayo or CC. Ask your doctor how many of these pouch advancement procedures he has done since he left CC. They are very very rare. If we end up incontinent we will have to go to a permanent ileo or wear diapers. It's a big surgery anyway you look at it.

TE Marie -
The last time I met with my surgeon he told me he can do this surgery before ever sending me off to CC. I told him at the time (a few months ago) I am not ready still too weak. Still too soon for me. I am not sure how many he has done that would be in my next phase with him before ever deciding this advancement procedure.
Canasa doesn't seem to work for me and the steroidal suppositories seem to be better but hate the side effects from them.
So, the question still remains what to do.....opt for advancement surgery or just go for the ileostomy.
Yesterday was desperate and did suppository and took cipro because I saw some blood. Will be calling GI today to let them know. I have appt. with them next week. Here we go again......!

Roberta

I am so sorry the suppositories are not helping you at all. Are you having side effects like we get from prednisone? I didn't notice any side effects when I was on the Anucort but was so miserable and had c-diff too so don't know if I would have noticed or not. I've found out on here that some people were allergic to Asacol, or mesalamine, before the surgeries. I took it for years. Obviously it didn't keep me from having the surgeries. Mesalamine is the ingredient in Canasa so I didn't have much faith in it riding my cuffitis (UC). They say it is more concentrated so should work. I'm not happy to have to use it a few times a week as maintenance but don't see another choice right now.

I'm so sorry neither one works for you. It is scary every time you see blood. I don't care how many times I've seen it before, I never get use to it. Maybe it's because I know it means "it's back". I have not heard of anything else to use. There are some foams that I think jeanne has used but I think they were for pouchitis.

Good Luck!

TE Marie -
I am one of those that is allergic to asacol. My surgeon prescribed canasa and I told him about the allergy but he said the body wouldn't react the same. I have taken it on and off and don't seem to have a problem with it but again, it isn't a cure. I did use it the other day to try and stop the bleeding and it seemed to work. Always trial and error with all these meds.

Happy weekend -

Roberta

It took months to work for me. Not a quick thing as my local GI and surgeon were expecting. I kept trying Anucort then Canasa then Anucort etc. I had been off and on them for almost 4 months before my GI sent me to Mayo.

The Mayo GI Specialist said to use Canasa until it worked and gave me a 6 month prescription. I think it was jeanne that told me it took her 3 or 4 months of steady use to go into remission with Canasa but both of us have it recurring.

He told me after it was better I needed to taper down to every other night to a few times a week to see what dose I needed to keep me in remission. I didn't pay attention and wasn't doing remission dosing and it came back. I used it for over a month and am back to every other night and not rushing to twice a week. When I do I'm writing it on my calendar to make sure I do not forget!

When I take Flagyl for my c-diff infections they get better pretty quick but that's a horse of a different color and uses antibiotics. I still need to take the full course of antibiotics when I start to feeling better.

If canasa didn't bother you maybe the problem was with the special coating that was on the Asacol. My dad thought for years he was allergic to penicillin but it was the Provacaine that was added to it in 1950 when he went in the Army. He is allergic to Novocaine and Provacaine is in the same family. He's had some bad infections where he could have used something in the penicillin family until an infectious disease doctor figured it out. He had to go through testing and is using it now. So you may be ok with the suppository now.

I've never gotten use to seeing blood