Have you thought about a permanent end ileostomy? That might clear up some of your issues.

I'm so sorry you're going through all this. And isn't it wonderful that you can come here and vent away to people who really understand?

kathy

You have a lot on your shoulders. I think it's normal to get down about things every now and then.

I have bad sleep apnea too and keep pulling the mask off or don't put it back on when I have to get up during the night. I even fall asleep on the throne sometimes. I'd lost so much weight they did another sleep study, hoping maybe I didn't need the CPAP anymore. I still need it and at the same high level. So now I get to worry about getting an enlarged heart as I don't wear it all the time I sleep. I am a worry wart.

I also have fibromyalgia including chronic fatigue syndrome. Have you ever been tested to see if you have any problems along this line. Fibro pain can vary and you can have flares, just like with IBD. I won't go into all of my pains but wanted to see if there might be another reason for your fatigue.

I'm on disability too and get massages all the time as that's all that helps with my muscle and neuropathic pain.

I've tried all different kinds of alternative treatments too.

Vent away - we understand.

Sorry you are having so many problems.

Your first paragraph mirrors my one-step surgery, apart from the 2nd ileo and stroke.

I actually would be interested to know how many single stage surgeries do not have complications. There do not seem to be many members on here who did the one stage.

I can see how if it does work perfectly as it should, it saves months of recovery time and potential future obstructions etc.

I just wanted to note that my daughter, age 19, had laparascopic one-step which so far (9 months) seems to be quite successful. She is just dealing with the bathroom trips (6-ish a day)and getting on with college. She has FAP not IBD so she was very "healthy" when she had the surgery. Maybe that's a difference. But it does work in some cases.

You are brave...since '97...thats a long time to suffer. I went to an end ileo in '09...finally got my life back. Not an ideal situation...but just to be healthy again makes the ileo well worth it...glad I had this option...you couldn't pay me to go back to my j-pouch.

ditched my jpouch completely and got my perm. ileo almost one year ago. Even though I still have wound healing complications.. I am so much better off.

Any reason you haven't gone that route? seems you've been suffering such a long time.

It's a bit of a tangent, but when I got fed up with CPAP for sleep apnea I got a simple mandibular advancement device (sort of like an orthodontic retainer) that works very well for me. It's called a "Herbst." Sleep dentists can be hard to find, though.

Thank you all so much for your encouragement and suggestions! I am so appreciative that you have taken the time out to answer and care. I have thought about an ostomy--I did have a difficult time with them the two times I had them as diverting ostomies--stoma and skin care, etc. The thing I want to know is, you are still left without a colon, and yes, no more fissures or rectal pain, etc., but what about all the other side effects of nutrition and absorption and the domino effect that creates? I am having a difficult time imagining that there would be a difference in that regard. My Crohns doctor tells me that in regard to the surgery, I am one of the subset of patients that had a poor result, but hasn't yet suggested a reversal to an ostomy...she may be waiting for me to be the first to mention it. Anyways, I would appreciate hearing more about the benefits of ostomy over J-Pouch with the other concerns I mentioned. Thanks so much for your kind input!!

Scott, I have a dentist about 3 hrs away that is supposed to be an expert in oral appliance fittings for sleep apnea. They are expecting me--the only thing is the cost of $2500. I hadn't heard of the "Herbst", but would be interested to know more about it. Is it different than a standard appliance. Was it difficult to get used to? And do you experience any jaw pain when using it? And cost? My sleep doctor specialist recommends that I go for the appliance in conjunction with the Bi Pap machine. It would certainly at the least be easier to travel with if it works well for me. I do have severe sleep apnea due to a bone structural issue as I am told and not due to a weight issue. Thanks, Scott, for any information you can add here.

TE Marie: Before the colectomy, I was diagnosed and struggling with Fibromyalgia and Chronic Fatigue. Interestingly enough, once I had the surgery, it went away. However, I wonder at times if I don't have symptoms of it again as I do experience chronic pain and fatigue, but then the sleep apnea would be a good reason for that. I have to admit I have been given to automatically rejecting the idea of Fibro/Chronic Fatigue entirely just because I didn't want to add more to the list. Tomorrow morning I go in for an EGD for chest/back/esophageal/stomach pain I've been having for a year now. I have been attributing the chronic pain I feel all over apart from that to the sleep deprivation and referred pain from it. Still, in the back of my mind, I do think of this possibility.

Kiwi Poucher: So you had sepsis, too, and had to have an emergency ostomy? I have read up on this a little bit recently, and it does appear that this is a common problem with the one step procedure. I would be interested to hear more about your experience.

That's great to hear BecMom.

Interestingly, your daughter had her one-step at about the same time as mine (May 2012). Seems like she is probably at about the same recovery stage as me. I empty my pouch about 8 times a day at the moment and have full continence. I have had pouchitis on and off, when it increases to 20+, but it is my understanding that is more prevelant in UC sufferers.

So all in all, it is probably worth going for the single stage, but don't rule out complications which are not pleasant.

Everyone is different, but 9 months down the line your daughter and I seem to be level on the overall recovery.

NYAGirl
Very Interesting. My Fibro got worse along with my final UC flare from hell and the surgeries. I thought it was a fibro "flare" but 3 years after that final UC flare started I'm still suffering with worse fibromyalgia. It's no longer a flare, it just is.

I can attest to the varying degrees of fibromyalgia. I still have hope mine will get better along with a little lingering hope the pain and problems resulting from the 2 open j-pouch and other abdominal surgeries will better as well. It seems my theory correlating them together might be flawed when compared to your history. Massages,heating pads and hot tubs are my best friends these days.

2 years ago I was 2 months out from take down and telling myself to hold on as it was probably going to take a year to become normal. IPS and chronic cuffitis were not on my radar back then.

I have been reading the recent post over the difficulties of a pouch and the issues of making the decision to have a permanent ostomy with great interest. I have had my pouch since Jan 2012 and it has never been easy and finally I have been told that I have chronic pouchitis.
Like others have mentioned ny life has contracted around me in an effort to 'cope' with everything and the thought of having an ostomy does keep coming into my head.
Like others I had a horrible experience with a loop ileostomy. I also felt that my skin did not deal with the adhesive from the bags well( seperate from burn issues due to leaks) and that does worry me because my skin has always reacted to potions and lotions.
I also worry about the abdominal pain which I experience and am not clear if it is all a result of the pouchitis or if I have an ostomy will I then jhave ostomy issues and still have the pain.
The pain is colic, nausesa and general tenderness.
I wondered if any one like CeeCee had any commnet on that issue?
Surgeons do not want to discuss those issues in my experience and as others have said they possibly see the question about abandononing a 'functioning' pouch as failure.
I do accept my health is better than with steroid dependent UC but I am so limited by pouch issues.
Sorry to be so full of self pity but I would appreciate any one's thoughts

I hear you, Not So Tough! It is a hard decision to make for some of us--ostomy vs. pouch. I have the same pain, tenderness and colic and nausea far too often, too, but I am told that it isn't due to pouchitis in the same breath I am told I am a poor result of surgery and one of the few that the J-Pouch does not work well. This is my second J-Pouch, having been rebuilt since the first one was done wrong--had continual Pouchitis with that one.

I also have the same issues with burnt skin around the stoma and getting a good fit. So not sure if I wouldn't be trading one set of problems for another of equal value, and then you can't go back. So I don't have any answers, but maybe others here will have better clues than we do.

I went from J pouch to end ileo and am very happy with the decision. I was lucky in having a relatively easy loop ileo so I didnt have worries about going to an end ileo. For many people the end ileo is much easier to maintain. Regarding the appliance(bag)itself there are many choices and most people experiment to find what works best. IMO The key is to get a good stoma one where the exit point of the output is 3/4" or so above the skin this makes for easy pouching. Given a good stoma, a good seal/fit is easy to maintain plus there are special things like coheasive seals that can be added if needed. Allergic reaction to the adhesives is fairly common and most people can find a brand they dont react to. If this is a big concern I would before surgery get free samples from a number of companies and apply them to you skin to see if you react. I use Coloplast sensura. Removal of J pouch is a big surgery and a big decision

Another thing you might want to do is have a remote consultation with Cleveland Clinic. You can send your records there and they'll take a look. Cleveland Clinic is where the 'poor-resulters' go. CC has a great reputation.

kathy

I went for an EGD yesterday as I have been having increasing chronic pain in my chest, stomach, left upper side and upper back, especially in the middle, along with nausea, stomach pain and weakness and fatigue off and on. It comes for a couple days, goes away for a couple and comes back with a vengeance. I had my gallbladder out in my early 30's. Doctor saw hiatal hernia, mucosal changes in stomaches (like chicken skin, he said in report), suctioned lots of billious (bile) fluid from stomach and there the pylorus was completely open without any muscle ring to let the contents of my stomach stay in long enough to digest. He thinks maybe H Pylori or Bile Reflux. He biopsied several places. Of course this means dumping syndrome, any my Crohns doc will still want to look at the pancreas with my history of several episodes of acute pancreatitis, which could now be chronic.

With all this in mind, if it is just H Pylori, which would be the least of it and addressed with antibiotics--the rest is chronic and unremitting pain and problems, I am thinking that the pouch is only a small part of the problem. I had a cholyscystectomy many years ago, and what I am thinking at this point with all the symptoms and signs is this is Post Cholycystectomy Syndrome since without a gallbladder, the bile duct just continually dumps bile into the stomach, and the this world class Pancreatic doctor down at Cedars Sinai already had to go in and do two ERCPs on my pancreas (cutting the ducts) due to stuff backing up in them about 8 years ago. There is the potential for all kinds of things to go south with this syndrome...and I am already exhibiting some specific signs or symptoms.

It just seems to go on and on. For every day I have that is good--where I forget that I was ever in poor health and want to shout to the world how happy I am, I have two that are bad with the constant trips to the bathroom 15 to 20 x day, fissures, blood, nausea, severe pain, fatigue, weakness, exhaustion and sleep apnea (I am using the BiPap regularly as much as I can along with the frequent night time awakenings of cramps and bathroom runs). I am just miserable on these days! As I sit here writing this, today is one of those days, 5 am awakening because of you know what! I can't seem to get more than 5 hrs a night interrupted sleep these days and then I am up for good with cramps, a mess, pain, etc.

I tried to talk to my best girlfriend last night and she just told me not to attach any grief to it before the final doctor's report after the last test. Don't think about it, she said. Ok. I told her sometimes you just have to have a little pity party and cry--but she implied that wouldn't do any good. Another friend implies people with chronic stuff like this must be getting some kind of "juice" out of it, that if we had enough insight, are powerful enough in our being, we wouldn't be sick and would heal. I feel shamed for talking about it. So here I am. Not a good day sitting here at 5:16 am, even on Ambien, unable to sleep with all the pain.

People who do not live with chronic illness just don't "get it," and it mostly is a waste of time trying to explain it to them. They think you are asking them for answers and advice, when you really just want to vent and have some empathy thrown your way. Not their fault I guess, because in their limited experience, all you need to do is focus on the end result. Easier said than done when you have the constant reminder of how your body fails you. I tried the "mind over matter, heal thyself" thing. Nice fairy tale!

You certainly have more than the usual share of bad crap messing you up, so you deserve to have your pity party. One of the good things about this site is that you can cone here just to vent and unload. Sometimes that is all you need to be able muster up what you need to face things again.

I'm sorry you are on this merry-go-round, and hope you can find some joy in this day to bring a smile for you.

Jan

Hang in there Not your Average Girl. We all know a little bit (or a lot) of what you are going through. I went to a new doctor for the first time last week due to moving across country. She looked at my history and said "You have had a very tough life." That was the first person in a very long time to even come close to understanding what I and we all go through. My wife who I love dearly doesn't even have a clue. I wish you nothing but all good days!

Jan is right. You are not expecting your friends to "cure" you, you need them to hold your hand and be there for you through the crises that happen in your life. Sorry to say I've had to get rid of a few friends with the "You just need to suck it up" attitude. They did nothing but bring me down further. I'm not telling you your friends are like mine were. I am doing much better without them. I don't have that many people in my life anymore but the ones I have are supportive. It's ok when they tell me to try a little harder when a special event or whatever comes up. I do get down in my depression too far at times.

It's your life and you need to focus on you. Be selfish, you don't have to explain yourself to anyone.

I think you are right about your j-pouch. As much as it would be great to go to a permanent ileo and have all of your problems solved it wouldn't solve them all. I have different other health issues than you do but feel the same way. I can't see changing anything making the quality of my life better and it might make things worse.

I'm glad they are doing all of the testing and there is no way you can forget about it until the test results come in. It's not like they are checking your vitamin levels or something insignificant.

Please keep us in the loop as we care.

I am so overwhelmed with the outpouring of kindness and compassion here. I guess in this case, it takes one to know one, huh? You get it, you understand, and for that I am very grateful. (BTW, it was early and I was tired when I typed my last entry, so please overlook all the typos--as a writer, I normally wouldn't let those go by. haha)

Ha ha, I make typos all the time, an incomplete sentence or misspelled word here and there all the time.

Glad you are feeling ok.

Yep, my fingers work faster than my brain it often seems, and when I am typing on my iPad, sometimes it is utter gibberish. If I am tired or rushed, I don't even notice until I look back hours later. Makes me think that everyone is wondering how many glasses of wine I had!
(for the record, none of your business!!)

I had one friend of a friend say that I needed to get out of my bad marriage because that was the reason I had colitis and I should never accept having my colon removed!?! Obviously, this person never saw someone circling the drain deciding between bleeding to death and ditching the colon...

Jan

TE Marie: We the people of big thumbs! tee hee!

Jan:
I am happy for all those people who like to give us advice or encouragement but do it in a way that makes the whole thing seem a lot worse or works at producing shame or guilt on our end--apparently they are lucky not to have gone through any of this kind of stuff because they were smart enough to know how to avoid calamity, illness, bad relationships, death, change, etc. These are the same people who work at convincing others that every unfortunate thing that happens to them is all their fault. Of course, I am sure they mean well--or so they think.

I have no use for those people. I have no idea if they mean well or not, but I just consider them less than smart... Right up there with the "I'd rather die than___________" people! Yeah, right...

Hopefully, they are just blowing smoke, and don't know how unhelpful they really are.

Jan

When I came home from the hospital the visiting nurses were coming to help in the beginning. A life long friend said they would have to come in and change her bag every time until her take down surgery. Implied was she was too good to do it herself as it was too gross. She was the one that told me to suck it up a few months later as I wouldn't come to one of her parties. I no longer talk to her and she continues to stalk me by calling my dad all the time.

Life is too short, we don't need friends like her.

Yes, most people don't get it. Almost all of them don't get it. But I have some friends (a couple) who are the most amazingly empathetic people I've ever met. They have two friends with j-pouches. When my friends encounter one of their friends who has 'specialties' in her or his life, they immediately start researching and getting all the information they can so that they can offer whatever support they can. They are saints and I'm so blessed to have them as friends.

Of course, my saintly mother is also of that ilk. I couldn't have been born to a better mommy (and daddy, when he was alive).

But most people on this site really get it and most here are the most wonderfully giving and supportive people on the planet.

And in closing... Jan - you DRINK? I'm shocked.

kathy

I have my dear friends whom I go to for certain things, and then I have a few other (and very few) who offer up compassionate understanding. I have just learned not to expect anything from the first kind. I have learned it is just too much information for most people and they can't really hear it. Although I have had a few doctors that really surprised me, too, and understood and said things like, "Wow, you've really been to hell and back with this, haven't you? I'm so sorry." I love them for that!

My Internist is one of those doctors. She came to see me after my surgeries, even though they no longer do that or get paid for it. She is the doctor that had the hard conversation with me about needing the surgeries etc.

Kathy you are blessed with your friends and mother. I emailed articles to my mother that she never read. She's from the I caused this to myself and need to suck it up class of people. I no longer have a relationship with her.

Good for you Jan, monitoring this sight could drive you to a glass of wine or 4!

TE Marie--Wow! Your mother--that is so sad. People can be so damaging to one another with their judgments about how they believe someone else should be. I have/am working hard on shucking off all those damaging relationships to my soul.

Yet even one friend that really gets it can go a long way in making up for the many that don't. We aren't looking for people to feel sorry for us--that sucks all the life out of the room. We are merely hoping that someone will take the time to find a little compassionate understanding in their heart and that will have our back rather than attack us while we are down.

Speaking of wine, maybe the juice is worth the squeeze!

I love your tag line! We could all use a little more of that!

kathy

ditto Kathy

To the special gal,
It is actually a relief not to have a relationship with my mother because as my therapist put it, she doesn't deserve a relationship with me. I had a wonderful step-mother so had some great mothering. She'd have my back right or wrong They call that unconditional love. Some people just are not capable of loving unconditionally. I moved in with her and dad 5 years after my folks divorce and was her only child too. Sadly she died 20 years ago.

Sorry to here your problem,i just got back from seeing the alleged magical dr shen,after wasting my time and totally disrespecting he diagnosed me withirritable pouch and to get rid of me gave me some stupid cream which didn't work a at all for butt burn,claimed i had the worst case of a spastic pouch he had ever seen,gave me antispasmodics,of course they didn't work i **** all of the airline seat,there is no hope,i hope your condition improves,the more i am around doctors they more i dispisethem.

Hi, Paulin! I know what you are saying. I went through a number of years with doctors like that. One doctor told me "not to wipe so hard" when I went to him for rectal bleeding. Another doctor decided to punish me for pushing him to do the colonoscopy I was all prepped for (he decided to only do a sigmoid last minute) by not letting me have any sedation for the procedure. Had I not pushed for that , he wouldn't have found the cancerous spot near my ileum, which I had dreamt about several months earlier. The dream told me that the doctor would not believe me and would be patronizing to me, but that I needed to pay attention. I have had so many of these types of experiences, too, but I don't know what happened, things changed and I have been very blessed to finally get doctors that listened, supported and respected me. It was work getting there, believe me, but I wouldn't rest until I found them. You can't let these guys that are practicing on you with their arrogance get away with it since you are the one that pays for it with your health.

If this was any other doctor, I might agree, but Dr. Shen at the Cleveland Clinic has more experience and knowledge regarding pouch related disease than any other doctor I have heard of. He runs the only pouchitis clinic I am aware of. While I don't have personal experience with him, the people here who have gone to him say he is the best and the absolute "guru" on pouch diagnostics. Because of that, he is very busy, which I am sure can affect his demeanor, and it seems that he does not have a lot of time to spend with long explanations and hand holding. But, the concensus of most reports on him seem to indicate he is very caring and attentive.

Hopefully, this isn't a case of "shooting the messenger" because the diagnosis is not believed or because the treatment was not effective. There is no treatment of anything that is effective for all patients. I can understand being mad about not getting relief though.

Jan

pauln,
I was diagnosed, along with cuffitis, with IPS by my Mayo GI last summer. I still have daily pain when cuffitis free and am taking an antispasmodic and Norco, hydrocodone & tylenol. They also say I have adhesion pain as have ruled out strictures etc.

One antispasmodic I tried made me throw-up so I'm back to what I took when I had UC, dicyclomine. I had IBS too. I don't know if it works or not as I'm still in daily pain. Has the medication Dr. Shen prescribed for you helped? What did he prescribe for you?

I've heard of his specially formulated cream before. I've also heard of people on here that were not happy with him as well. I guess when all you see are people with problem pouches you are bound to disappoint some. I wonder if you didn't have a big enough problem for him to take much time with???

Is the antispasmodic working for you at all?
Thanks

jan dollar,i can assure you my comments do not mean i wanted dr shen to hold my hand in your words,i have legitimate concerns and no amount of attempting to belittle me personally will work,all i was doing was commenting on my personal experience because i did not say he can walk on water does not mean i believe he is a bad doctor,point is maybe we did not click personality wise. pmj

Sorry, Paul, I did not mean to offend or belittle you. Poor choice of words I guess. I just meant that some docs are strictly business, and do not have much in the way personality or bedside manner. This can be quite off-putting for some, particularly when they had to wait a long time for an appointment.

Jan