Having a tough time

In May 2014, the muscles in the bowel forming my j-pouch went "floppy" overnight, and my pouch became huge (sometimes called "megapouch"). My abdomen swelled up alarmingly and I was only passing toothpaste-sized BMs. Now for more than three years I've had to deal with a constipated j-pouch (the irony is not lost on me!).

I didn't know it that day (I thought it was some weird after-effect of food poisoning I had recently had on an overseas trip, or maybe a blockage or adhesion), but that was the end of my life as I knew it. I spent the first year exploring every avenue to improve things, but to no avail. I keep telling myself "This is the way things are now", but everything is so rotten that I can't accept it.

My abdomen is constantly distended - I look like I'm three or four months pregnant by the end of the day - and I often have painful indigestion after eating, even though I only have small meals. It feels as though someone is making balloon animals out of my intestines after I eat. By dinner time I often have to undo my clothing or change into my pyjamas because of the discomfort. I can't bend down to do up my shoes, or cross my arms, or hold my weaving loom. Sometimes my lower back hurts because of the extra weight I'm carrying in my front.

If I want to exercise (I'm trying desperately to get some endorphins), I have to sit around and wait 3-4 hours after eating or drinking, otherwise I can feel the food gurgling up and down inside me when I run. You know when you try to unblock a toilet with an old-fashioned plunger? That's what it feels (and sounds) like.

And everything social revolves around food. It's very difficult to go for a meal, then only eat a small amount. People don't understand that eating hurts me now. I've had friends tell me I'm making them uncomfortable by not eating, and even been told off for being uninterested (I was trying not to cry with indigestion pain so went a bit quiet). If I try to go to non-food events, I have to fast beforehand so I'm not in pain, but then I just feel hungry and faint and can't enjoy myself.

There's no way I can go out to work either, because I only feel reasonable between 11am and 2pm (providing I don't eat lunch). I used to do editing work from home, but the stress of living like this for three years, plus sleep disruption, has reduced my attention span. I no longer have the capacity to do anything even mildly demanding. I can't concentrate, and I make silly mistakes and forget things all the time. If something small goes wrong, I end up in tears.

As if this wasn't enough, a bunch of other stupid stuff happened to me as well, like people moving in next door to my "dream home" who turned out to be arseholes, not getting on with my dad's new partner, and needing a root canal. Plus there's the 50 boxes of stuff I need to sort out after my mum passed away.

I had bought an old house, which I planned to enjoy renovating for the next few years, but between my physical discomfort and lack of tolerance for stress - well, that's not happening at all. I thought I'd be inviting friends to stay for the weekend, writing a "How I restored my home" blog or even running a B&B, but instead I've had to move in with my dad because I couldn't cope with being on my own. It's like everything I planned for the rest of my life was cancelled by this.

It's not just the pain and the discomfort and the inconvenience, but the isolation and inactivity is killing me. I'm in tears every day from pain or loneliness or just plain disbelief that I've ended up in this situation. I feel like I've aged 15 years since this happened. The only relief I've had in three years was when I got gastro and didn't eat for three days - after the vomiting stopped, it was actually heavenly to have no appetite and a normal-shaped tummy for a few days.

The only treatment option I have is a permanent ileo, and they have to open me up from sternum to gizzard again (if that's a phrase). When I had my temp ileo my skin was so sore and excoriated, even with visits to the stoma nurse and much effort on my part. My skin is very sensitive and changing the adhesive was horrific - I still blench to think about it. And anyway I'm in no state to deal with a major operation now, even if I wanted to. I've got PTSD from a separate matter and would freak out being in hospital.

I never imagined when the surgeon told me "The j-pouch may not last you for the rest of your life" that it would give out when I was only 39. (Oh yeah, this cancelled my 40th birthday party as well.)

If I eat, I suffer. If I don't eat, I suffer. I can't win and I don't know what to do in order to be able to live with this. At the moment all I can say is that I am existing, not living.

Original Post

I don't know whether writing all this down helps or not. I just felt the need to "rave and rant" to people who know what it's like to have chronic illness and spend lots of time and effort managing stuff that healthy people don't even have to think twice about 

Wow!  So sorry to hear you are going through this misery...  the pain, bloating and everything you mentioned you have to deal with when you eat sounds like my life before my Jpouch....  it was awful...  i can't imagine going through everything you have gone through and still have to be miserable. 

Sure hope you can get some answers soon...  and like posted above, a second opinion sounds like a good idea..

Kushami, 

I am so sorry...sympathy first...it sucks...but there are solutions.advice next.

...advice next.

First off, what do you or don't you eat? Can you stick to a high protein low carb diet? 

I lived with a miserable k pouch (for different reasons...difficulty intubating it or severe leakage due to hernias) for a very, very long time...effectively I ate a very low residue, high protein diet...it had the advantage of not upsetting my pouch, not overfilling it and still feeding me...giving me enough energy to go to work, reduce the pain and gas (no carbs meant very little gas for me)...it also meant that I did not need to empty my pouch in public which was a real problem for me at the time.

As for alternatives...Why can they not try a K pouch or a Bcir? They are internal pouches (they may even be able to reuse your original j pouch and just build a valve for it) that have an abdominal opening (a stoma) that has a 1way valve that doesn't allow anything to come out until you want it to...you intubate (put a catheter into it)...you would not need to wear a bag, have adhesives on your abdomen or deal with the other ileo issues that may come along with one...find out if you are a candidate...And yes, it is a major surgery...must be done as open surgery and requires a long healing time.

As for the social isolation...I understand...I had a few very bad years...my solution was to constantly invite people in...I became a great cook...Which allowed me to be around food, serve food and enjoy my friends and family without actually having to eat very much...and not get criticized...they were always too busy enjoying it to notice that I wasn't eating...(hubby did but kept quite...Still does)...I had become terrified of going out due to severe leakage but did not want to suffer the social isolation...

There are always solutions...(once the PTSD eases up...it takes time and help)...but cutting yourself off socially is a descending spiral...the more alone you get the more lonely you feel and the less you want to see people...I am now back to working nearly 4 days/week...I take public transportation to and from (hubby has to drop me off and pick me up from the subway...its too far now) work and fast from 8pm the night before until nearly 5 pm the next day...I cannot eat when I work other than very small quantities of high proteins (cube of chicken or cheese and a few cherry tomatoes)...it is the price that I pay to be able to work...it is very hard some days but I have become accustomed to it...and the pride I feel about working and not being housebound is worth it...

Not saying that you can or should just that there are alternatives possible...

Don't give up...life does not end when your j pouch gives in...it just takes a little more ingenuity to outsmart the darned pouch.

Sharon

 

I hope you are feeling better. I really empathize with you as I went through years of a bad acting j-pouch before I had it removed. I know you aren't ready to go this route uet but should you ever have any questions about that surgery send me a PM.

I didn't want this either but my quality of life has improved and I wish I'd had the surgery 18 months before I did. I first was just diverted to a permanent ileo in hopes my j-pouch would get better without use. That surgery was laproscopic so is one thing you might want to consider.  My end ileo is much better than the temp one was.

I see this post was a while ago but felt like responding... First time on here for me!

I just returned from the Cleveland Clinic where they did a minor surgery under light sedation to hopefully fix my "floppy pouch." My problem was that the collapsed part of the pouch was blocking the way out, causing me to strain horribly in the bathroom. Very painful! Plus this led to constipation and horrid bloating. I'm still recovering but wanted to mention it - maybe there's something that can be done to fix your pouch!

I hope you feel better soon 😊

TE Marie posted:

I hope you are feeling better. I really empathize with you as I went through years of a bad acting j-pouch before I had it removed. I know you aren't ready to go this route uet but should you ever have any questions about that surgery send me a PM.

I didn't want this either but my quality of life has improved and I wish I'd had the surgery 18 months before I did. I first was just diverted to a permanent ileo in hopes my j-pouch would get better without use. That surgery was laproscopic so is one thing you might want to consider.  My end ileo is much better than the temp one was.

 

Thanks for your reply, TE Marie. I have been told by two surgeons at one hospital that laparoscopic surgery is not an option for me, even if the aim is to rest the j-pouch. I am in Australia and don't have private health insurance, so it's not easy for me to seek out any other surgeons. I'm left wondering whether no surgeon anywhere would do it laparoscopically, or whether it is that Australian j-pouch surgeons haven't taken up this procedure yet.

I heard that there is a new j-pouch clinic starting at another hospital, so I am going to try to get seen there so I can access to a different group of surgeons and get a second opinion.

I am really glad that you are feeling better with your perm ileo. I sort of wish that I had just bitten the bullet and gotten that done as soon as things went wrong (4 years ago).

Unfortunately,  I'm in a difficult situation personally at the moment – had to move out of my house, and am staying with my dad, which is not ideal because lately there is quite a bit of noise here. It used to be so quiet, but neighbours/nearby businesses change, and at the moment I can't imagine convalescing here. I also have PTSD which means I get a fright when I am woken up by a sudden noise, and it takes me ages to get back to sleep.

ladygrace99amk posted:

I see this post was a while ago but felt like responding... First time on here for me!

I just returned from the Cleveland Clinic where they did a minor surgery under light sedation to hopefully fix my "floppy pouch." My problem was that the collapsed part of the pouch was blocking the way out, causing me to strain horribly in the bathroom. Very painful! Plus this led to constipation and horrid bloating. I'm still recovering but wanted to mention it - maybe there's something that can be done to fix your pouch!

I hope you feel better soon 😊

Oh, I do hope it sorts things out for you! If I suddenly got rich, I would be on the first plane to the Ceveland Clinic and St Mark's in London to get second opinions. (I live in Australia.)

Please post again and let people know how you are going. Not many people post about floppy pouch (mine is "megapouch" variety – stretch out beyond recognition and muscles no longer contracting to push the poop out in a timely fashion).

Best wishes for getting things sorted out. By the way, isn't it bizarre to have constipation with a j-pouch :-)

Sharon, thank you for sharing your experience and thoughts. I am afraid that I do feel my life ended when my j-pouch gave in ... I mean, I am still here, and not in immediate danger of dying, but I'm existing rather than living at the moment.

I am glad you are able to work part time. I wish I could have continued working, but the bloating and my living situation mean I can't sleep properly, and therefore can't muster the concentration (I'm an editor).

You are right that isolating yourself makes things worse. I have been making the effort to see friends. Most of them have no idea how hard it is for me, but I am trying to be accepting. After all, in order to understand, they would have to go through something that made them feel as bad as I do, and I certainly don't wish that!

Thanks again for replying,

Sarah

LibertyJ posted:

Wow!  So sorry to hear you are going through this misery...  the pain, bloating and everything you mentioned you have to deal with when you eat sounds like my life before my Jpouch....  it was awful...  i can't imagine going through everything you have gone through and still have to be miserable. 

Sure hope you can get some answers soon...  and like posted above, a second opinion sounds like a good idea..

Yep, it is like life before the j-pouch, you are spot on.

Looks like I may be able to get a second opinion at another hospital ... takes soooo loooong though. I waited a year to get into the bowel clinic at this second hospital, so who knows how long it will take to get into their new j-pouch clinic. 

(I had to wait a long time because my condition isn't life threatening. When the j-pouch first went haywire, and we didn't know why, I was seen at the first hospital very quickly.)

lablover posted:

Holy cow. I am so sorry.  Can you get a second opinion?  

 

Thanks for the kind words. I have seen two surgeons, but one was trained by the other and they work at the same hospital. I am hoping to see a surgeon at another hospital in the next few months. I'm in Australia, using the public system, and just to complicate things I live in a small town that is 2 hours away from the nearest city that has major hospitals that do j-pouch surgery.

I have another thought. Part of my j-pouch failure was strictures that made emptying it difficult. I gave myself mini enemas 4-6 times a day to empty.  I had a bidet which made things easier to do at home so I was pretty much homebound. When I had to leave home overnight I had an enema giving kit that I used to give myself enemas.  I remember visiting my son and lying on his bathroom floor while doing this. 

You might want to try doing this.  My GI at the Mayo Clinic knew about it. Both he and the surgeon that ultimately removed my j-pouch showed me on imaging test results how my anal canal had narrowed.  

Maybe if you did this it would help. I'm sad that you have to live like this. 

Add Reply

Likes (0)
Copyright © 2015 The J-Pouch Group. All rights reserved.
×
×
×
×