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A tip for Loop Ileostomy or those with de-functioning J-Pouch

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Wed Feb 17, 2016 5:38 pm
Hi there,< >                    Just a tip for those people with a Loop Ileostomy or a de-functioning J-Pouch ( my configuration ) . In the Stoma there are two openings, one going down to the Anus and the other exiting into the bag. Being flat in bed allows the liquid to be sucked into the wrong exit...ie..going to the Anus instead of out and into the bag. This situation causes copious amounts of fluid to exit the Anus , without any warning...very disturbing indeed without some form of padding in my underwear. In my case it was drawn into the decending section of the loop at night and would make an appearence throughout the day. I had to change my underwear and often my pants several times a day for several monts . I recently saw my surgeon and asked if he could close the Stoma opening going to my butt and he said that this was not possible for several reasons. I told him that I had seen little bits of food , carrot specifically coming out my butt. He seemed surprised by this and wrote it in his notes. I don't think he had considered the problems that this could cause for the patient. < >     My Brother had a temporary Loop Ileostomy and had been using " Absorbagel " Packs in his bag. He gave me some when he got his reversal and I began using them. I initially used only one pack in my bag and it did thicken the fluid but had no effect on the gushes of fluid that  came out my butt. When I began putting  2 of the little packs in my bag I saw a dramatic difference in the butt discharge of fluid. < >     I now Use  2  Absorbagel packs in my Ostomy bag every time I empty and they solved the problem that I've been having for a long time. When the output is very liquid , as it usually is with an Ileo, the Gel packs change the contents of the bag from very watery to a ( Stinky ) pudding-like consistency. The thicker stinky stuff no longer gets sucked into the decending part of the loop when I lie down at night. The cramping I was having was partly caused by the fluid going where it was not supposed to go and activating  Peristalsis in that section of the loop, in my lower abdomen. These muscle contractions combined with scar tissue were causing my cramping and severe abdominal  pain.< >    The combination of the "Absorbagel " and the Buscopan or Bentyl  ( antispasmodic ) have given me my life back....almost...and the cramping and fluid discharge is almost completely resolved. My next step to normality will be getting to ride my bike again...if the rain ever stops here in Co Mayo !!! has been raining for months almost non-stop .< >    Some of what I just wrote may be a repeat of some things in a previous blog but I wanted to explain fully now that I feel that the Absorbagel plays such a big part in the solution to this nasty, painful problem .< >   I hope this combination , gel packs and Buscopan , can help someone who is having this type of problem. Give it a try if you have to change your drawers lol !! four or five times a day or are awakened by gut wrenching cramps during the night and the day.  I would really like to know if anyone else tries or has tried this and what the results were for you.< >   Thanks in advance. Magoo .< >
Fri Feb 19, 2016 10:02 am
Hello Magoo.
I don't have the problem and am never likely to, but I really enjoyed reading your post - so I thought I'd just write and tell you!
Thanks.
Best wishes Bill
Sun Feb 21, 2016 4:21 am
Hi Bill, thank you for the kind comment. My doc has told me that I'm the only person in the entire town and surrounding area with my particular configuration so I have to go to Dublin, 3 1/2 hours away, to find the experts ( I have one !! ) when it hits the fan !! I'm just putting off the inevitable, having the pouch and what's left of my rectum removed and have the lot sewn shut. I was thankful to find this temporary ( ? ) solution. Even if nobody else responded I hope the tip was useful for someone out there ?
All the Best , Magoo.
Wed Feb 24, 2016 4:46 pm

Hi Magoo, 

great reading your post.  I'm plumbed pretty similar!  Have a non - functioning J pouch,  and a loop ileostomy. I agree with you that the doctors /consultants are amazed that we can pass stuff both from loop ileostomy and down below! ☺ My loop ileostomy been with me for several years, this time.  I asked if I could have the internal j pouch removed and have a permanent end ileostomy, and was told it was too dangerous an operation for me. I can't have my loop ileostomy released either,  because my j pouch is too small, I have too many adhesions,  and I have both stictures and too loose muscles where needed. So I  carry on living with the best of both worlds!  I have had camera tests where they went up the up route and then the down route from the loop ileostomy.  Which was a most unusual sensation! I may well try this solution that has worked so well for you . especially at night,  as normally I dont eat after 4pm to stop any problems my digestive system may be planning for me at night!   Thank you for the advice,  and your interesting post.  Sorry my reply gone on a bit! Stay healthy and happy ☺

 

Mon Mar 14, 2016 4:37 pm

Hi Dazer

    I haven't been on the site for a while , lots of stuff going on. I'm trying to finish a kitchen extension and not get sick from all the cold, wet weather here in Mayo..Ireland.  I'm so happy to hear from someone with my exact intestinal configuration . My GP has never had to deal with one like mine before, I actually inform her about  a lot of things which she can pass on lol !! She's an Angel !! 

   Yes , I think the surgeons don't even consider the problems caused by the Loop Ileo and the section which connects to the butt. I think that my Surgeon never even considered the problems it could pose, until I told him that I had seen the bits of yellow carrot ( well cooked and soft ) when I wiped . He looked up with a questioning look and then began writing but did not really comment on it. There were four students in the room ( I think that I was part of their exams , happy to help ! ) so I don't think he wanted to say that he had never considered it a major problem. He did take my comments seriously however when I explained to the students about the problems it caused.

   I was dog / house sitting for my Brother in the last few weeks and experimented with a new diet....being out of my usual environment. He has a complicated stove which frustrated me so I decided to eat various forms of sandwiches for the twelve days that I was there. I made all kinds of combinations to experiment. I was a long way from a store ( out in the country ) and did not drive there . The first day I stocked up on fresh ( not processed ) ham, pepperoni, salami, avocado, pate' ....anything that would taste good in a sandwich. My preference is for French long bread...the skinny loaf or small grain brown sliced bread. After a few days the change just amazed me. The leakage from my butt stopped almost completely, my cramping stopped almost completely and I had much more energy. The week before that I was changing my underwear three or even four  times a day !! I had been getting a sudden discharge of fluid from my butt at the most inconvenient and embarrassing times and  kept underpants handy at all times. I was using "feminine pads "  in my drawers all the time and still got wet pants !! I'm home now and I'm keeping with the sandwich diet and I'm still having great results . I think it may be the bread, which I used to rarely eat, that made a difference and the protein from the various meats, Avocado and eating more bananas which helped with my energy level. I would stay away from Protein Drinks, number one they go right through you and you really don't know for sure where that protein came from ?? regardless of the labels !! 

   I use up to three of the little "Absorbagel" packs in my bag every single time I empty and this is very important. If I forget to put them in when I empty at night the Stinky ends up coming out the wrong " tube " ....my butt !! while I sleep and I have to get up to change underwear. When I use them I have very little problems with leakage. I have stopped taking the Buscopan and am not getting the cramps now.

   I used to eat a lot of Chinese and Japanese noodles ( Udon ) but now I only have them once or twice a week...with very little liquid. For hydration I mix just a soup spoon of concentrated juice into a liter of water and drink about four of those in 24 hours, this works well for me. For about six months I used to mix Knorr powdered soup in with my noodles and a small amount of meat and some veggies because it seemed easy to digest. I had much agony over the past year and tried lots of different variations in diet. My current diet satisfies all the Protein, Carbs and veggie requirements and seems to be the magic bullet....for now at least ???

   Up until about two weeks ago I was sure that the pouch and what's left of my Rectum would be gone at some point this year and I would have the agony of more surgery facing me again !! that's not the case any more ...happily !!

   If you use the "Absorbagel" packs you will find a big difference in the leakage problem. I've never had a scope through the Ileo and my sphincter and anal

canal are too scarred to get a scoope in there without doing damage ( I've had three Abcesses and agonizing surgeries following scopes in the past, I would not allow that procedure now, too dangerous ) .

    I think I've outdone you in my verbosity LOL !!! I do tend to ramble on once I start.....I was an English Major so when I start I don't know when to stop !!  and computer science. The effects of stress kept me from the computer science life but I'm still a bit of a techie.

    Thank you for the comment , it really gave me a lift. I'm feeling great right now and hope it stays that way.....give the sandwich diet a try ?? and tell me if you had similar results, it could just be a coincidence , with our problem who knows  ??

Magoo.

Mon Mar 14, 2016 5:36 pm

Hi again Dazer ,

                             I meant to ask you if you had ever actually tried the "Absorbagel" packs ?? and if so , what was your experience ? I just looked at your profile and see that you are a Scribbler lol !! I used to love writing short stories but haven't in quite a while now, never published . I guess my self confidence has been damaged by my altered body image over the years . You know all about the psychological ups and downs involved with our problem which is never talked about and which I always felt had to be a secret agony to be tolerated alone....until I found this site I might add. My passion has been photography for some years now, I love to capture a special moment in time. Every photo has a story and a memory embedded in it.  I'm going to post some pics I took on a recent beautiful day at my local lake.....just one day and then the deluge again....as they say " this too shall pass " and the sun will shine again.

Today was one of those rare days and I drove out to Clew Bay , Westport in Mayo. What a beautiful place when the sun shines. Ever been to Ireland ??

  Later ,  Magoo.

Tue Mar 29, 2016 7:52 am

Hi Magoo,

Was going to say I've never been to Ireland,  then remembered moved there for six mo6, when I was very young!  Oops!  My dad was Irish,  but sadly apart fom the one visit he never encouraged us to go. However I keep promising myself to visit,  I guess it's a question of getting the confidence to go. It would be fascinating it to see, as an adult,  the beautiful place my parent came from. As long as the farmer has forgotten that I,  and family friend's children wreaked his hay rick ☺ Thank you for the advice re the absorbable gel. Which I will try. And thank you for your interesting reply. The photography sounds wonderful. I've thought about it, but a moment don't even own a camera. ..last one got smashed. .another life. Hope you have a great day for you and photography ☺

Wed Mar 30, 2016 4:44 pm

Hi Dazer,

                  So nice to hear from you again. I think you would love it here ...if the weather behaved lol !! It can be really horrible in bad weather . It seems to have rained here every day for the past six months !!! We actually had four months this winter when it rained every day !! I hate it in bad weather but as soon as we get a little sun I'm in love with the place again . I live in County Mayo...in the Wild West haha. The scenery is amazing , even in bad weather.  I have a couple of people in various places I write to occasionally , people I met on the site . Where did your Dad come from?? I prefer The West where I live, I love the wildness of it, the beaches and clifs on the coast, I'm about  5 miles from the ocean, Killala Bay. We  used to play on the hay ricks as kids, collect wild mushrooms and blackberries. We would leave in the morning and run around the fields until dark. Back then nobody worried if we were gone until dark, not the same now of course. The farmers use those ugly black bags for the hay. I lived  New York and them San Francisco for many years . SF is so beautiful...ever been there ? I came back here to recouperate from bad  surgery and stayed to look after my Mom. I stayed on after she passed away. Such an Angel of a lady . I visit SF and NY  and DC every year so I get the dose of sunshine , beach time  nice time with family that I need. Otherwise I'm quite happy living alone with no mortgage to worry about.

   I've been rambling again so I should stop now haha !!

   Talk later,  Magoo.

 

    I've been too busy lately to spend a lot of time on it. I've been doing work on my house and it just never seems to end !! I added a new kitchen but it will be a while before I'm cooking in there lol..When I'm not feeling well everything just stops and I have to give it a break. I was feeling like crap all wimter , belly, nutt pain etc etc....you know how it goes. I get "Pouchitis" and it kills me with cramping when it is active, just like Colitis all over. again.  As with you I can't yet have the Pouch removed yet. Now I've given myself a hernia !! My Stoma was re-sited and the old scar has herniated . It's not bad so no surgery just yet. I was doing a lot of heavy lifting, doing most of the work myself and it becomes a bit of a struggle sometimes, quite stressful.

    I went to Clew Bay , Westport ( you may have heard of it, near Galway ) to buy a kitchen I saw online. What a deal. Just the granite counter top was worth more than I paid for the whole thing, all appliances included. Right now it's taking up half the room and making it hard to work but if I didn't take it I would have missed a great deal. I can work around it. I'm a bit stressd at the moment, always seem to be lately !! The Absorbagel is making a big difference with night time problems. I'm not having night leaks anymore and do not have to get up as many times. The Gel turns the Stinky into a sort of thick paste so it doesn't slosh around at night. I still get leakage out the rear but not nearly as much.

   I have some Ireland pics on my profile , I'm going to put some more recent ones up when I finish here. I got some nice ones of the local lake scenery recently on a rare sunny day with snow on the mountains a few miles from me.  I have a big printer so I make sme nice wall prints, 13' by 19', at that size they make nice prints.

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