I have a question for anyone who has an end ileostomy. I am disconnected from m j pouch an was wondering if it was normal to have a lot of gas? I often have to empty my bag not because it is full with feces but because it it blown up from air? There are nights that I'm up every hour or so due to it being inflated, I hardly eat I haven't been hungry my appetite hasn't improved at all I've lost a good ten pounds and I hardly eat. I literly force my self to eat. There really isn't much I crave for. To be honest it's been making it very difficult trying to prepare meals for my family because of it. What can be causing this?? Is it normal that the discharge is beigy and bloody the leakage is worse at night time and if I over did it durning the day. My fear is that I have been reading about pouchagrams and pouchascopy how can they know for sure it is pouchitis and Cuffitis or even over bacterial intestinal growth? My worry is that at the end I will end up loosing my pouch because of poor investigation??
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It is common for a disconnected pouch to give lots of problems like you describe. Your gas problem sounds to me like bacteria overgrowth. If I was in your shoes, I definitely would be trying some antibiotics to see if that would help things out, since it sounds like you have both pouchitis, and SIBO.
You've got to eat. Your intestines actually produce more gas when they're empty, and you need calories after surgery to heal.
It's common for the disconnected pouch to cause problems, but increased gas in the ileostomy bag is not one of them. It could be SIBO but you won't know until you start eating more. Try to eat five meals every day and include a protein source with each one.
It's common for the disconnected pouch to cause problems, but increased gas in the ileostomy bag is not one of them. It could be SIBO but you won't know until you start eating more. Try to eat five meals every day and include a protein source with each one.
Thank you for your reply,you are absolutely right. I know that I need to eat more, but my appetite is poor, and things are not improving via leakage problem. I'm really getting scared because the cipro n flagyl was making the nausea worse and after being switched to avelox and the docytab i started to break down into hives. What I'm fearing is that they stopped the meds, and now I have been losing bloody mucus even when I go just to urinate, I have no controll!!Plus I feel urgencies and well wearing an ostomy bag n a diaper not the best of looks!! Sadly this has started from the begining of disconnection, end ileostomy and well that was April 2012 and well lets say I've been through more medical issuses to top it off.They said being disconnected was supposed to allow my pouch to rest. (REALLY)?
I feel like they have left me in the cracks and are not taking me seriously
I'm afraid that I will end up losing my pouch, because of negligence medical practice.... I am really scared. How long can the pouch be diconnected without function and what are the chances of it failing to work once reconnected?
I read that the pouch can become stiff due to access pouchitis??
I went as far as going to the obunsman to get some help. Does anybody know what else I CAN DO???
I'm not recieving any treatment at the moment and I don't have any follow up appointment awaiting either. What do I do???
I feel like they have left me in the cracks and are not taking me seriously
I'm afraid that I will end up losing my pouch, because of negligence medical practice.... I am really scared. How long can the pouch be diconnected without function and what are the chances of it failing to work once reconnected?I read that the pouch can become stiff due to access pouchitis??
I went as far as going to the obunsman to get some help. Does anybody know what else I CAN DO???
I'm not recieving any treatment at the moment and I don't have any follow up appointment awaiting either. What do I do???
Well, you can make a follow up appointment. Leakage and incontinence seem like a reasonable complaint to follow up with.
Cuffitis can be detected with a digital rectal exam. Pouchitis would be diagnosed with a pouchoscope -- since you're disconnected that could be performed without prep.
BTW -- it is 100% normal to not be able to hold your bowels when you urinate. You mentioned that mucus comes out "even" when you urinate, but that is normal.
Cuffitis can be detected with a digital rectal exam. Pouchitis would be diagnosed with a pouchoscope -- since you're disconnected that could be performed without prep.
BTW -- it is 100% normal to not be able to hold your bowels when you urinate. You mentioned that mucus comes out "even" when you urinate, but that is normal.
While a diverting ileostomy is supposed to rest your bowel, over time you can develop diversion pouchitis ( similar to diversion colitis). Essentially, your pouch becomes inflamed from the lack of nutrition from the fecal stream. The treatment is restoration of bowel continuity (take down of the ileostomy). If that is out of the question, you can try hydrocortisone or budesonide enemas, short chain fatty acid enemas, and/or glutamine suppositories. If only the rectal cuff is inflamed, mesalamine or hydrocortisone suppositories can be tried. Each of these treatments will take a week or two before you can expect improvement.
Jan
Jan
I hope it's only diversion pouchitis and nothing more. The sad thing is my doctor hasn't taken an examination of me of any sort, since my pneumo thorax in may 2013!
I have been waiting for sphincter repair since summer of 2012 when I changed hospital for second opinion.
Due to the complication I needed to wait, and I have been patient about it, but I wasn't leaking as much, now it's getting hard to live with.
All I am asking for is some kind of treatment to help me some what to make it easier to cope with, am I asking for to much! I don't even know for sure if its pouchitis, diversion or cuffitis?
If he doesn't take a look in pouch how is he to know how to treat it??
I can't get any of the meds you mentioned without a prescription.
It is really starting to scare me,changing doctors in Montreal is no joke to begin with, imagine someone as complicated as me?
I'm so afraid that waiting any longer will put me at risk at losing the pouch?
I have been waiting for sphincter repair since summer of 2012 when I changed hospital for second opinion.
Due to the complication I needed to wait, and I have been patient about it, but I wasn't leaking as much, now it's getting hard to live with.
All I am asking for is some kind of treatment to help me some what to make it easier to cope with, am I asking for to much! I don't even know for sure if its pouchitis, diversion or cuffitis?
If he doesn't take a look in pouch how is he to know how to treat it??
I can't get any of the meds you mentioned without a prescription.
It is really starting to scare me,changing doctors in Montreal is no joke to begin with, imagine someone as complicated as me?
I'm so afraid that waiting any longer will put me at risk at losing the pouch?
I don't understand how come it takes so long for patients to get needed care in some places in Canada. Can you keep calling and calling like we do here? Can you go into the ER or an Urgent Care facility to speed up the process? It sounds like by making you wait that you could be developing a worse problem and I really feel for you. I know I don't understand your system and am just frustrated for you.
Sadly to say that no, I called twice and was told by my doctor that he would appreciate it if I wouldn't pester his secretary. He stated how hard she works for him. Imagine that, and I called with a weak interval.
As for going to the ER hasn't worked either I was there for 4 days in a corridor, seen by his residents and a week later by a colleague, that said she couldn't comment on what my dr was doing. That was this early December.
It wasn't like this when I first got sick 24 years ago.
Scary for us sick patients, but we are needy,and have to stay as politely and patient as we can.
As for going to the ER hasn't worked either I was there for 4 days in a corridor, seen by his residents and a week later by a colleague, that said she couldn't comment on what my dr was doing. That was this early December.
It wasn't like this when I first got sick 24 years ago.
Scary for us sick patients, but we are needy,and have to stay as politely and patient as we can.
Hi L.DL
I'm sorry to hear about all the issues you are experiencing - both with your health and with your medical team.
When you say you are calling you doctor, are you meaning your GI doc, your family doc, or your colorectal surgeon?
My surgeon is Robin McLeod in Toronto, and she made it very clear to me to always go to her with any post op issues with my jpouch and ileo, that she prefers to see her patients as opposed to going to my GI.
I'm not sure how it works with our provincial health care plans, would it be possible for you to travel to Toronto to see the team at Sinai? They are excellent and I have never been dismissed the way in which you have.
If I have issues and call the office, we either troubleshoot over the phone, make a clinic appointment or I am told to meet my surgeon in the ER. This is the level of care you should expect.
Maybe it would be worth you putting a call in to the IBD office at Sinai to see it you could get a consult. PM me if you need contact #s.
Best of luck.
I'm sorry to hear about all the issues you are experiencing - both with your health and with your medical team.
When you say you are calling you doctor, are you meaning your GI doc, your family doc, or your colorectal surgeon?
My surgeon is Robin McLeod in Toronto, and she made it very clear to me to always go to her with any post op issues with my jpouch and ileo, that she prefers to see her patients as opposed to going to my GI.
I'm not sure how it works with our provincial health care plans, would it be possible for you to travel to Toronto to see the team at Sinai? They are excellent and I have never been dismissed the way in which you have.
If I have issues and call the office, we either troubleshoot over the phone, make a clinic appointment or I am told to meet my surgeon in the ER. This is the level of care you should expect.
Maybe it would be worth you putting a call in to the IBD office at Sinai to see it you could get a consult. PM me if you need contact #s.
Best of luck.
Thank you PoucherInTo, I've never pm anyone don' t know how to go about it.
If you would be kind enough, and walk me through the steps!
I may have to go and get a third opinion I'm really not up to this, feeling the way I do, but doesn't look like I am left with any another choice.
I feel so lost and confused, with everything that has happened , I starting to get trusting issues
If you would be kind enough, and walk me through the steps!
I may have to go and get a third opinion
I'm really not up to this, feeling the way I do, but doesn't look like I am left with any another choice.I feel so lost and confused, with everything that has happened , I starting to get trusting issues
Hi L.DL
OK I sent you a PM so if you look near the top of your screen you should see a tab that says NewPM!
If you click on the tab it will take you to an "inbox" of sorts, kind of like when you log in to check your personal email.
There, you will find a PM (or email) from me, just click on it and you can read it and then there is a "reply" button for you to click on to write back to me.
I hope this helps!
OK I sent you a PM so if you look near the top of your screen you should see a tab that says NewPM!
If you click on the tab it will take you to an "inbox" of sorts, kind of like when you log in to check your personal email.
There, you will find a PM (or email) from me, just click on it and you can read it and then there is a "reply" button for you to click on to write back to me.
I hope this helps!
There is a vent (called easy vent I think) you can install on the bag so you dont have to get out of bed to release the gas. The built in filters do not work very well with an ileo. Also many people just "burb" the bag lying on back just hold the bag up and release the fastener a bit letting the gas but hopfully nothing else out. It is a bit tricky.
I had a disconnected J pouch for about 6 months I had goobs of the type of discharge you have Nothing I tried medicine wise helped. It was very difficult to keep it from leaking out so I had my pouch removed and have an end ileo that I am happy with.
I had a disconnected J pouch for about 6 months I had goobs of the type of discharge you have Nothing I tried medicine wise helped. It was very difficult to keep it from leaking out so I had my pouch removed and have an end ileo that I am happy with.