When will it end?

So sorry Spooky,
I know how hard it is when no one is listening but only hearing what they want to hear...
Yes, there is always a reason why we bleed...no, they do not always find it and sometimes it just resolves itself (and sometimes not).
I get the part about it looking like more than it actually is but the only way that you are going to get them to take notice is to do a stool collect over a period of time (usually 48hrs) and have them analyse the totality for blood content.
That is how they did it with me...gave me a hug glass jar and had me fill it directly for 2 days....
I would suggest that you get yourself a jug, start filling as soon as you see bleeding and then take it in yourself and hand it over...(you tend to get noticed at a hospital when you walk in with a jug fill with blood and sh-t)....
My only suggestion to get them to listen to you...hope that it can help
Sharon

Sharon, the problem is that after a year, this issue is clearly not resolving itself. Yes, it does improve, often for several weeks or even up to a month or so at a time, but then the problem recurs.

Frankly, I was surprised they'd want to scope again considering I've already had 2, but it is a new GI and I guess he wanted to see for himself.

But I get you; visuals are important. I'm just about ready to start taking photographic evidence to bring to my next appointment. I don't think I've ever been so fed up in my entire life. I feel like I'm living my life from one medical appointment to the next, because they just keep booking me for follow ups. Monitor and see! Come back in 1 month, 3 months, whenever. It doesn't help that my GI has changed twice in 18 months. But there has to be a way to break this cycle. This just isn't acceptable for me anymore.

Yep... a video of my spasms got my doctor to finally pay attention that everything was not so "rosy" with me.

Use your cell phone or a camera. Maybe start a log of diet and frequency of blood. Maybe there is a correlation.

Les, thanks for the tips. I may have to start documenting with actual photo evidence.

As far as logging things, as this has been ongoing, I've paid very careful attention to what I've been eating or doing when I have these episodes. I'm pretty confident at this point that the bleeding is not specifically related to any particular food or activity. For instance, I am actually a horse back rider and I do yoga - haven't linked the bleeding to either activity. It actually seems to happen more when I am LESS active, which is bizarre, but then again there is no notable pattern to this, as I mentioned.

Note your prescribed and over the counter meds and vitamins too. Also any seasonings and spices.

Sending prayers and good vibes that you get a resolution!

Spooky, I am with you that these are random events. It still boggles my mind that they refuse to look beyond the pouch as the bleeding source. Upper endoscopy and/or camera pill endoscopy seems like the likely next step rather than just patting you on the head and sending you on your way...

Jan

Thanks Jan. I am just so fed up at this stage. If I can avoid another crisis between now and my January 6 follow up, I am prepared to push as aggressively as necessary for further testing. I admit I'm fearful of the camera pill, but at this point I will do it if it can give me some answers. I just can't live my life like this anymore. This has gone on long enough and I think, after a year, that we are well past the "monitoring" stage. I have a lot of things I want to do and admittedly now this is holding me back, since the events are so random and I never know when I'm going to get one bad enough as I did last week, that sends me to the hospital. That being said, I am still not disappointed with any of the decisions I made regarding the pouch. I am, however, disappointed at the level of care I have since received. I never thought I'd still be exactly where I was a year ago. It's very discouraging and disheartening to me. Clearly, though, there is something wrong, because I had a well functioning pouch with no bleeding for 4 years prior to this. That's why I just can't understand why I'm essentially being sent away time after time, like a revolving door.

quote:

When will it end?

 Welcome, la

I have nothing to add except I am sending good thoughts your way. I can't believe you are being dismissed like that..grr.

spooky have you had upper GI scope AND a small bowel series. I have some stuff thats been going on a long time too and I finally got back to a GI I really liked. Anyways, he started with an upper scope,... and found some problems. And also has me doing a small bowel series next week. He said too risky to do camera pill if there may be problems in small intestine and they can see what they need with small bowel series.

I haven't been on here much - partly because I lost my power/internet during the massive ice storm, but also because I just need a break. Anyway, thought I'd give a little update, since I had my follow up today. My GI has referred me back to my old surgeon. He feels the cuff/staple line might need to be cauterized, but wants the surgeon's opinion. He also wants to do another pouchoscopy in May - either to cauterize then if the surgeon hasn't already (if still necessary), or just take a look. It seems they want to scope me every 6 months or so for the time being.

So clearly, this GI thinks the bleeding is from the anastomosis. He did say it bled quite freely during my last scope. I'm still not entirely convinced; nobody mentioned this to me after the previous 2 scopes. My former GI scoped me twice and said everything looked fine.

Still not happy, but I guess I'll wait to see what the surgeon says. I hope I'm not waiting another trillion years for an appointment.

Well, I suppose that you can look at it this way: like it or not, at least it is a different answer than you have been getting. But, my big question would be "What would they cauterize?" You'd think that there would be something rather clear that would be the source of the brisk bleeding other than "the anastomosis." I agree that a surgical opinion would be useful, and hopefully it is not another round of being tossed back and forth like a hot potato!

This waiting has to be the most intolerable thing...

Jan

Well yes, it's something, other than the "I don't know/I don't see anything/let's just wait and monitor it" that I've been getting for literally a year. I understood my GI to mean the cuff and/or the staple line. I should also mention that my hemoglobin is now 10.7, which is lower than it has been. I don't like that either, but I'm also not surprised, since I have been feeling a bit run down. Repeat bloodwork every 4-6 weeks now.

But no, I am not happy that this has essentially been sat on for a year, and that it took yet a major bleed and another trip to the ER to get anybody to take notice. And yet I'm STILL waiting. My surgeon, though I do like him, acts as if he's the busiest physician in the world, and getting an appointment with him is always like pulling teeth. Maybe the GI referral will speed it along, but I'm not holding my breath.

This really has been a very trying experience for me, between being bounced to different doctors and essentially feeling dismissed or ignored. I admit that I'm now pretty disappointed in how things have transpired.

It is that way sometimes. If you are not literally having an emergency, there are others with other more pressing issues.

I have been sitting on simmering and flaring inflammatory arthritis. My rheumatologist does not want to get too aggressive with something that is chronic.

Anyway, a month after giving up and having an IM Kenalog shot and two very short tapers of prednisone, I came down with a virus that wound up sending me to the ER with sepsis (violent chills and fever, low blood pressure, etc.) right before Christmas. They ruled out pneumonia, urinary tract infection, and bacteremia. The assumption was flu, although I did have the flu shot early in the season. The flu PCR tests were negative, so now the assumption was that it was a simple upper respiratory virus (a cold!). Even though they gave me IV antibiotics and Tamiflu during 3 days in the hospital, they said that they did not make any difference. It was simply giving me lots of IV fluids until the crisis past that mattered.

So, my next question was, "Is it time to revisit my meds, Simponi in particular?" The response was no, just be alert in the future and keep up the hand washing. Hopefully, it was just a fluke. Luckily, there was no organ involvement and it did not advance to severe sepsis/shock.

I guess I will never really know what happened.

Jan

Spooky, I don't know how the "system" works in Canada, but if at all possible, start asking for copies of your medical reports.

I was completely lost for 2 years after my supposed "neurological stroke". Nobody wanted to put a label on what happened to me, other than to say "it is not MS, but we don't know what happened to you or why"

Yet, nobody was helping me with my residual side effects. I finally got reports and found a neurologist recommended by a friend who at least put a label on my neurological event and prescribed neurontin.

Jan, that must have been very frightening. I do find it disconcerting when they can't tell you exactly what happened, but I'm glad you are feeling better!

quote:

It is that way sometimes. If you are not literally having an emergency, there are others with other more pressing issues.

Yes, as I've found out the hard way many times, even going back to trying to establish my original UC diagnosis. You'd think I'd be used to it by now...

Les, I am able to get my records as per privacy legislation, but here we don't have much in the way of choice of physician. We need a referral from a GP or a primary care physician to see any specialist, so choice is limited.

I would still ask for your reports so that you can ask questions, do research and become more informed.

I agree, Les. I do have copies of some of my reports and lab results, and my last GI was kind enough to give me photos from one of my pouchoscopies. Otherwise I try to make sure that everything goes back to my GP so at least it's all in one spot. I'm only 35 years old, but I seem to be collecting a laundry list of specialists since UC reared it's ugly head (though admittedly it would be fewer if my GIs stopped leaving! *LOL* I'm on my 3rd GI in less than 8 years - 4th if you count the doctor who was filling in temporarily when the last one moved out of the country. No wonder this is taking so long to sort out). Hard to believe I was hardly sick a day in my life before that. :/

I managed to get an appointment with my surgeon for less than 3 weeks from now, so all things considered that isn't too bad.

Guess we'll go from there.

ETA

I'm planning to go in with a list of questions for the surgeon, mainly:

- are we sure the cuff/staple line is the source of bleeding? (because nothing really showed up on any of the prior scopes, other than "bled freely" on the most recent one).
- a camera pill endoscopy was mentioned to me several months ago as a possible investigative procedure. Should this, or additional further imaging, be performed to rule out other causes?
- if we go ahead with the cauterization, what exactly will be cauterized?
- what are the risks of this procedure (i.e. damage to the cuff, nerve damage, perforation, etc. My pouch function is otherwise excellent and I do not want to compromise that).
- Is this a common procedure?
- what is the expected "down time" for this procedure?


Any other suggestions for questions would be greatly appreciated. I really want to make sure I get solid answers this time, not just theories or speculation, and that they are not going to put me through a potentially risky cauterization when there is nothing concrete to cauterize.

I have to hope that I am finally on my way to getting all of this sorted out. Thanks again for all your help, and listening to me vent for all these months. This site really is great.

I can tell you one thing. Cautery is generally a very superficial thing. They see a bleeder and cauterize it. It does not go through the full bowel wall. However, if it is not bleeding at the time they are looking, I am not sure what they would cauterize. You would not cauterize an area that is just inflamed, but a specific spot that appears to be bleeding from a small artery or vein.

Still, any time you are scoped there is risk of perforation, so my other question would be is all this invasive testing warranted, when you keep coming up with the same result (nothing).

Wouldn't some noninvasive diagnostics like MR enterography, or even camera pill endoscopy be more revealing of new data?

I do give your new GI credit for wanting a surgical opinion before proceeding.

3 weeks is pretty darn good I think!

Jan

Thanks for clarifying that, Jan. I was sort of half suspecting the same thing - what can they cauterize if they don't see any bleeding areas? I had an MRI enterography last February, however since the bleeding has persisted and in fact worsened, I would think that might point to further imaging. That is tops on my priority list to ask before I consent to the GI prodding around and randomly burning things off Perhaps the cuff/staple line has been bleeding -but for the amount I'm seeing, filling the entire toilet bowel hourly -- it seems a lot for that. So it has occurred to me that I might have more than one problem going on.

Yes, I'm happy with the timeframe, actually. I'm lucky that my surgeon and his secretary remember me very well (and in fact, he also repaired my brother's fistula), so I'm sure he made an effort to squeeze me in. After all the bouncing around I've done this year, it's about time.

Yikes, what a nightmare! I hope you get to the bottom of this quickly. And I second Jan, the more non-invasive the testing the less risk of perforation, which has GOT to be better for you.

I was cauterized after a biopsy left a bleeder in my pouch, and the relief and change were immediate. But that was an active bleeding spot.

Sorry this is happening. Maybe taking in the actual blood isn't such a bad idea!

Hope answers are found soon,
Gin

Ginlyn, absolutely; at this point, it really has turned into a nightmare. I've developed other autoimmune-type issues over the past year as well, including dry eye and facial/skin swellings (which I don't think I mentioned, but the swellings have FINALLY been diagnosed as dermatographism - swelling cased by pressure, usually seen in conjunction with other autoimmune disorders). I still think everything is connected, but the GIs have been pretty dismissive of the other symptoms I've been having. This bothers me too, as I think they need to look a little more closely at the whole picture - the blanket term autoimmune raises alarm bells for me, and could be massive clue to everything else that has been happening. I also don't like the fact that I've basically been strolling around with anemia for months. I'm feeling pretty run down. Nobody has had any suggestions other than to throw more iron pills at me... how about, locate and stop the source bleeding? Geez. It seems so rudimentary to me.

Anyway, I hope this surgical consult finally ties everything together.

Hmmmm.... Do you see a different GI each time? You're probably right, the different symptoms probably are connected. Even if they are not part of one issue, they certainly affect each other and the body's ability to cope with all of them going on.

I don't know any GIs in Toronto, all my treatment in Canada was in Kingston. The lifesaver there for me, besides my amazing surgeon, was my family doctor who was very wholistic in her approach and a HUGE advocate for me. Do you have a good family doctor? Maybe he/she could help put things together.

Sorry about this!

Gin

Spooky, let met get this straight. Your GI sees blood at your cuff and thinks it needs cauterizing but doesn't think it might be cuffitis? Did he take biopsies? I know they know what these things look like. My surgeon did a visual check and diagnosed cuffitis the first time I was diagnosed, without biopsies. I'd had stools of blood. If you are not being treated for cuffitis I can see hos you would continue to have the blood loss.

Sorry, I must have missed something in the conversation.

I think if you were their daughter or sister they would think the matter were more serious than it is! I'm glad you are seeing your surgeon soon!

TE Marie - exactly. If it is the cuff that's bleeding, then wouldn't that be considered cuffitis? Yet the term has never come up, even though I've asked. And in fact, on two prior scopes I was told the cuff looked fine. Hence my confusion. A few months ago I was given suppositories as well as enemas, but it turns out I don't tolerate mesalamine. However, if this is cuffitis -- even if nobody is officially calling it that -- I'm aware there are other cuffitis treatments, yet I wasn't offered any of those alternatives. The thing is, I am supposed to be going to the best place in Canada for IBD. This hospital does more j-pouch surgeries than any other institution in the country. This is why I'm baffled. Anyway, I see my surgeon on the 29th. I am desperately hoping he can shed light into what has been going on. Anyway, I quite like my surgeon and I'm glad to be going back to him.

Ginlyn, I don't see a different GI each time, at least not anymore. What happened was that my previous GI left the country in July, so I had to be referred to another GI, but he had a 4 month waiting list for an appointment. In the interim, since I was having a lot of issues in the summer (I actually did have pouchitis at that time), I saw another GI through a "fast track" urgent IBD clinic referral. He was the one who prescribed the enemas and suppositories, however there was no formal follow up since it was a clinic setting, and they knew I had another GI referral pending. I also wasn't deemed a severe enough case to be followed (frustrating, though I do appreciate that there are people with a lot more serious problems than I have). Regardless, I have to think that perhaps this process wouldn't have been so drawn out if I also didn't have the misfortune of being "caught between doctors." At least I really like my new GI, so that is a good thing. I also appreciate that he is asking for a surgical opinion, though perhaps this should have been done 6 months ago through my former GI. Whatever. I guess I have to look on the positive side, that at least we seem to be moving forward now rather than just sitting on this.

I can see how this could seem like cuffitis, but not be cuffitis. Cuffitis is inflammation of the retained rectal cuff tissue. Easily diagnosed by a "bumpy feeling" cuff on digital exam, visual examination by scope and confirmation by biopsy.

However, you can have bleeding from the suture line that is not due to cuffitis. If you have a stapled anastomosis, there can be a foreign body reaction to the staples. Even a hand sutured anastomosis can have suture related inflammation. There can be scar tissue related inflammation for a variety of reasons, like ischemia (reduced blood supply), incomplete healing (leakage), etc.

If you have a "bleeder" that needs cautery, usually there is some associated inflammation or ulcer that exposes the blood vessel, making it prone to bleeding.

Jan

Jan, that would make sense, especially since my GI mentioned possible bleeding at the staple line. If that is the case, then it would be correct that I was told I didn't have cuffitis after the previous scopes. Anyway, like I said, I feel like I'm on the path to possibly making some progress now. At least some of this seems to be making a little more sense.

Ah ha, it makes sense now. The biopsies must have come back negative for cuffitis. Thanks for the explanation Jan. What a long time to wait for treatment, change in doctors or not

Saw the surgeon yesterday, and guess what? He wants to scope, even though I was just scoped in December. I've already been scoped 3 times in 18 months; this will be the 4th. I don't really know what he expects to see since the other scopes didn't show much, but all of this is just never-ending. I guess it's good that he wants to do something rather than just turn me back out onto the street. I'm just tired of everything.

So sorry to hear about the never ending scopes and no answers. Sounds like the docs are pretty sure the bleeding is coming from somewhere down south and not an upper GI problem. I was just going to suggest if they are doing ANOTHER scope, might as well throw in the upper one too to get a bigger picture, but maybe you have had one recently. Best of luck with this next scope. I know how you feel being stuck with no answers. And seeing blood every day is so scary :-(

I have not had an upper GI series as of yet; I did have MRI enterography last year. As I've said many times, this entire experience has been immensely frustrating. In some ways it's been worse than the initial UC and round of surgeries, because at least then we knew exactly what we were dealing with. In this case, I just keep getting passed around like a hot potato, being sent for tests over and over again, and despite all that, not really getting any answers. Even this bleeding staple line is just a theory. Anyway, I go on Feb 13. The surgeon is going to video the procedure and send it to my GI. My GI tentatively has me scheduled to be cauterized in May (yes, yet another scope, potentially); though depending on this upcoming scope, maybe I will not need to go again in May.

I'm so sorry to hear your delemma, my heart goes to you. I'm a newbie ans well been living hell like most of us on this forum. I changed hospital which was not easy hear in Montreal. Long story short I was told I had a rectal vaginal fistulas after dilivering my first child and had emergency total colectomy.they tried repairing it with setons 3x no success reconnected ileo anatamosis withe rectum left in still passing stool through vaginally. Did j pouch at same time 10 tears later again loop ileo with loop was passing stools still from bottom while wearing bag was told fistulas had healed takedown 18 months later. Complications leakage still fistulas 2 doses of remicaide no help the problem was bad vaginal infections developed abscess, fixed that then mistaking a skin tag for another abscess pathology confirmed the error still battling with leakage bad treatment kept throwing to one dr then another had action blockage that resulted to total hiterectomy temp ileo tried convincing me the fistulas would heal. Reversed ileo 14 months later. They forgot an ovary during supposedly total hiterectomy that was covered with cysts that twisted on
me causing severe pelvic pain having issues evacuating which should not be the case with j pouch,was told that that would adjust when in fact the inflammation got so bad that it blocked my kidney eurithia ending in emergency surgery with ended up keeping me in hospital for 6 months consisting of 8 surgeries that we were told we're due to complication fancy word for medical errors my abdomen got perforated forming another fistulas they kept telling one thing then another perforated other kidney at end had no choice to form an end ileo to allow body to rest to to mention that I pleaded they stop touching me and that I didn't want to be touched fighting to stay alive to finally sing my self out was told that well the fistulas that he seen would hell they would find a stent and that due there was no stool passing through would be on my side they put a mushroom plug to avoid abscess. Once strong enough left scared and confused took my files to another hospital. Which said they would take care of me.they took me in removed mushroom and pleated that I never go back. Well the horror began they sent me to specialist to identify the fistulas but seen dimples but were not sure they decided to put me under anestisia shoot up air in anal area and see if any air would come seep through. They through so much air that they collapse both my lungs ended up with full pneumo thorax and thrombosis in lung. The best part is still could not pin point fistulas. So surgeon says I'm feeling over welmed due to the amount of leakage from pouch and vaginally. Well they send me for MRI which states a vpf my dr says no,the radiologist made a mistake. the symptoms im feeling are miss leading because it's probably a malformation, and I think it comes vaginally but really it seeps though,and I think I feel it the way I do. So surgery, over surgeries, trauma over trauma Im wearing a diaper with mucou bloody, ileo that often lifts and causing severy rash. difficult to get follow up appointments.They haven't done any test confirming anything. They are know talking about sphincter repair with pacemaker but I'm fearing of fistulas because of past. And even more so loosing my pouch due to sever inflammation and not functioning for over 2 years.


? I'm loosing trust in my medical system The sad part is the way it's taking over my Mind and affecting my quality of life. The only option the gave me was removing pouch..bbbut research tells me other wise.... Theres thek pouch, bcir,I feel they just want to get me off the list and that's that. In Canada the way we get treated is very different then the USA. Each step never constants of weeks or a couple of months, years go by.

I'm afraid to ask, but can you get a 3rd opinion? Is there a better hospital to go to? I think it is all run by the territory you live in right? Is it possible to go to a different territory when your doctor's have made such a mess of it? Can you appeal above their heads and ask to be seen by someone brand new? I know what you mean when you say they all stick together. I have also heard of some Canadians coming to the U.S. but don't know if they paid for it them selves or if the system paid for it. I can't quite follow everything that they have put you through but what I did made my head spin. You must have a massive medical record to show whoever you appeal to.

Yeah. Could be my imagination, but it seems that the Quebec provence seems to keep cropping up with troublesome hospitals. Any way you can get to Ontario. I hear. Nothing but great things about Dr. Cohen and his team in Toronto.

Jan

There is a dr.cohen that is part of the team at the Jewish hospital here. The dr I'm seeing has great reviews. Before the complication of the pneumo thorax n the error of forgetting to remove the central line that had 2 blocked lines prior to installing pic line. He was optimistic, n had a few options for me. This was April 2013. I still had the on going leakage problem from j pouch rectally n vaginally! The fact of being on cipro n flagyl orally but responded better IV. They assumed I was not absorbing it enough. So due to the thrombosis stopped it n left it at that. I've seen a change in the dr. Comportment..I kept going to see him due to crohnic leakage, scared not to mentioned discouraged. He never said maybe to go back on antibiotics orally. He suggested an anal plug!because I still complained of leakage n feeling it pass vaginally. The idea freaked me out. So at this point sends me for MRI. Which cost me 1000$ because to do it in hospital I would take over 12 months.!!long story... The results state vpf which he doesn't support.... Has dragged me from sept, up till dec which lead to ER completely drained out seen by an intern whom gave me wrong dosage of antibiotic, it took 1 week to get a hold of proper prescription. Later seen by another surgeon because he was away for 2 months whom abruptly told me ( so your the one their wasting their time on... N blurts out she apologizes for being the devils advocate but just get rid of that pouch n get on eith your life!) This is our medical system here!

As for a 3rd opinion a file like mine, who's going to actually want to take on the challeng? Here the hospitals are all connected. I highly doubt my insurance would cover it.

The Dr. Cohen I am talking about is Zane Cohen. He is a colorectal surgeon, not a gastroenterologist. There typically is a long wait for him.

I have no way of knowing if your pouch is salvageable, but it is possible that these doctors that recommend opting for a permanent ileostomy and removing your j-pouch are trying to think of your best long term interests. They know how many terrible complications you have survived and worry that further attempts to salvage the pouch could lead to more disasters. Some doctors are just more risk adverse than others.

From what I've heard about Dr. Zane Cohen, he seems to have that perfect blend of the skills to tackle the biggest challenge, and the experience to know when it is time to throw in the towel and accept an outcome you do not want. He also is skilled in continent ileostomy surgery, so that might be an option for you.

Jan

It's not the same dr. But who knows if not related. Thank you for his full name.

Jan I really appreciate all your kind words! This forum is great!!

Honestly I'm complaining on how bad the system is here. Things don't take weeks, months its actually years for me. The procrastination doesn't work in my favor. It's very difficult to process wearing an ileo but yet also wearing a diaper because I get urgencies and have to run to bathroom so the humiliation is beyond me.

Like a mentioned in my last posts I've been through many surgeries that were told by doctors them selves that some could of been avoided which could of prevented some of the complications.

I ve been battling from different views from some doct. Against others. It's hard to be told you have a fistulas,get an MRI that confirms one,but doctor denies the findings. then to be told,It's pouchitist! Then no its not, its my imagination
The leakage may be from a mal formation and lack of weak sphincter caused by 4th degree tear from natural dilivery,which could lead to leakage from having end ileostomy, and a pouch that's not being used. Causing excess mucous that seeps through.

There is no sign of crohns at least not to this point. Their suggesting sphinter repair with interslim pacemaker. If they come across fistulas will use gracilis muscle flap. How can I trust this is my best option?
They never mentioned a continent pouch

This raises insecurities because I've been complaining of leakage with steaks of blood pink mucus dischard, fatiqued and discouragement and this goes back from july 2012 and well not once have they gone in and given me the benefit ot the doubt. Is it pouchitis? Cuffitis or something else.why did they wait all this time to give me antibiotics their not even sure for what it's treating.

What bothers me the most is I never got the chance to be followed by a gastro! because my problems always end up neglected and then leads to er that lands me into emergency surgeries. Trying to get an appointment is difficult and follow ups are even worse.

Am I sure this is the best option for me??? Not sure! But can't continue living like this... A bag that's ripping my skin off, because of leakage seeping through and can't live with sores and rashes and lack of sleep because of constant leakage with no control

So what hope is there for me?? I'm trying to stay afloat cause throwing in the towel can mean different thing... Life has been tough and I know many of you have had it tougher so thank you for sharing your experiences with me.a big thank you!

So because of so many complication I feel intimidated and scared, lack trust and know that due to my file not many will even give me a second look! I just don't want to go through more surgeries with no results. I wish they would put some priority in the matter!!

LDL,
There is really no reason you should not be able to find ileostomy "gear" that stays on, doesn't leak, and doesn't damage your skin. There are simply thousands of types of appliances and more so methodologies on how to get things to work and be comfortable.

Are you under the care of ostomy nurses? If you are and you are still having problems, then see if you can get help with a different ostomy nurse. If you are not, get into one. It is an ostomy nurse's job to get gear working that doesn't cause leaks, doesn't damage your skin, and is comfortable to wear.

also seems like you have diversion pouchitis. There are treatments for that which work well for most people. Have you tried SCFA (short chain fatty acid) enemas? Or Rowasa enemas. or even hydrocortisone suppositories.

also flap repairs for fistulas have a low rate of success. research that one before allowing anyone to do that.
good luck.