Before takedown, I experienced similar as yourself; I had the J pouch and it wasn't completely connected, its output was more mucus than anything else.

The output from the loop ilestomy was pure liquid with what looked like translucent rice grains in it.

Two different hospital believed I had a blockage, although there was output from the Stoma.

The admissions into Hospital resulted in IV fluids and GI Consultants came to the conclusion, that I wasn't absorbing enough fluid, despite what I was drinking.

I was told that rather than measure my fluid intake, it's much easier to count how often I pee during a day, as pee is surplus to what the body needs.

I was told, I should pee no less than three times per day and it should be the same colour as golden straw, a pale yellow.

My issues was resolved by takedown.

Maybe you could be dehydrating and not realise.

Hi, Strange! Wow, you really went through it! It seems like such a surreal experience having a J-Pouch and/or ileostomy as so many doctors don't really know much about what seems to be going on except by trial and error. I am happy you got it resolved--that was probably very scary for you. I know I had some really serious issues the first couple of years with my J-pouch an ileostomies. Now it just seems that the adhesions are finally catching up with me--at least that is what I am thinking. But it difficult to really get the doctors to pay attention unless you are laying on a gurney in severe pain . Thanks for responding!

Hi, Claire!

Thank you for responding. I think you hit the nail on the head as far as a low residue diet--at least that is what I am assuming a FODMAP diet is? What is Symprove? I have never heard of that. I am becoming rather nervous every time I go to eat. Anymore, I am in discomfort 80 percent of the time.

I have often wondered if stress might play a part in exacerbating the adhesions and obstructions?

Yes, antibiotics can definitely take a toll on the gut. Are you using probiotics to help alleviate the effects of the antibiotics?

FODMAP is not low residue diet, it's a specific approach being used in IBS, if you google low FODMAP & Monash Universith you will be able to read about. Worth trying if you feel some meals are ok and others aren't, as there might be lots of trigger foods creating IBS symptoms.  Symprove is a liquid probiotic  http://www.symprove.com

have you had strictures/ adhesions ruled out ? 

Look up diaghrammatic breathing this relaxes bowel and really helps sometimes !  

Hi, Claire! I have been diagnosed with adhesions...I'm a walking landmine of them they say. I am having a difficult time with roughage, or bulky raw foods or presently, most anything I eat or drink. I will look up the diaphragmatic breathing for sure. Wonder if it relaxes adhesions, too.

I really must be better with the probiotics, too! Thanks, you've been a big help!

Well they thought they were the issue for me too, until they did an op and there weren't any...! Good luck, try low fibre, softer foods and small portions often, not rushing, and helps to rest after eating while doing long slow breathing to keep bowel relaxed for digestion. As for the probiotics, there are strains that are associated with motility so it can be an important route but need high quality ones that survive etc..

Thank you, Claire! I plan to put that advice into action and see if it help, and especially research prebiotic like you mention.

 Have you had an abdominal MRI ? No problem, hope that some of the ideas help, do let me know how you get on! It's very difficult problem to manage, but things can get better with time. Cutting out wheat made a huge difference to me also

I am back and forth with gluten free and not. Need discipline more. But I woke up with that nagging tugging pain again in my abdomen in the same spot. Doctor says that the adhesions can definitely pull and cause pain as bowels are always moving around. I guess I'm really paranoid about obstructions. That same spot just keeps poking at me over the last couple weeks going from mild to nagging to doubling over pain. No MRI yet. I don't suppose there is anything the doc can do unless it becomes something that absolutely has to be looked at as an emergency! I am the one who has to change it all up with eating properly...which is no guarantee, but it would sure help more than hurt by doing so.

My problem is I can't eat or forget to eat or don't take to plan ahead and then when I feel well enough, I eat too big a portion and pay the price. Doing so much of what you suggested may help in not just this area, but many others, too!!

Thank you! You are wonderful, Claire!

Dear Not your average gal... I hope your issues have been resolved by now, but if not, perhaps I can suggest something.  I was having the same symptoms as you, except that they seemed to come from the same spot (lower left abdomen). Have you had a scope recently?  I had a scope (done by my GI doc) of my j-pouch recently and it went into part of my small intestine.  He found what looked like a rock and it was as hard as a rock, too.  It was too big to come out, and when he tried to break it up, I was in too much pain.  So he stopped and today he saw me as an outpatient and gave me heavy sedation so I would not feel the pain.  He broke it up, and now it's gone.  

(I don't eat rocks, , so he thought it was stool that somehow became rock-like over time.  Weird, huh?)

Bottom line, if you haven't had a scope recently, perhaps it would help figure out what is going on.  

Maverick, that's called a fecolith.  Here's a description: https://en.m.wikipedia.org/wiki/Fecolith

I have also had 2 fecaliths in my kpouch. Both found by dr. Shen at CC. The first one was very big and i had to have lithotripsy to break it up ( just like a kidneystone). It was considered surgery and there was a urologist and CR surgeon in surgery at CC.  Shen discovered it after I had gone to 3 other doctors and had scopes by all of them. (None of those docs found it) The pain would occur about 2 hrs after eating. He said it was in my access channel, the area between the small intestine and pouch. 

I now have a scope by shen every year. Last June he found another one, he said it was not that big! One year later I had an MRI at CC in FL  ( where I live) and it showed up! I was thinking I would have to have lithotripsy again, so I was getting prepared. I went back to Shen last month for a scope and he was able to get it out (it was smaller and softer than the first one) He said they are not able to analyze it. I was extremely relieved that Shen got it out.

So now I have to go back every year to Cleveland for a scope. shen says fecaliths are very rare!

Maverick, welcome to the club you don't want to be in!

Hey, Marz!

Whoa! That's trippy! I never heard of such a thing! Getting caught in the passageway has gotta hurt big time! 

Yes, aren't we lucky...not! Not a club I aspired to join. And I LOVE popcorn, but right now I don't dare even think about it. 

Thanks! I learned something brand new today!

Not your average gal! posted:

Hi, Claire! I have been diagnosed with adhesions...I'm a walking landmine of them they say. I am having a difficult time with roughage, or bulky raw foods or presently, most anything I eat or drink. I will look up the diaphragmatic breathing for sure. Wonder if it relaxes adhesions, too.

I really must be better with the probiotics, too! Thanks, you've been a big help!

Hi, i can really understand what you mean, I Too Have multiple adhesians and a narrowing over the stoma site on my right side im now on a liquid diet and antibiotics just to prevent surgery due to my age and complicaions they really dont want to be operating because adhesians will double and re appear at some point, Theres no long time Cure  so im on a 3 week watch just to stay away from hospital, Im still getting a pain and ache but apparently thats expected because adhesians pull on you inside, Im at a loss i can give up food if it means im well, but even giving up food doesn't seem to fully help, im seeing dietitian and ibd nurse shortly, ive started a diary also because the less water i drink and the morre i physically do the worse the pains are, if you need tio talk ill be more than willing acording to my surgeon adhesians are comman, but to get pain and blockages from them in the pouch is rare! So its just bad luck.

Aaro, the issue with adhesion surgery isn't that it never works, but that it often fails. IMO it's well worth trying if you're reasonably confident in the diagnosis and your quality of life is low. I'd choose laparoscopic surgery preferably, to try to reduce the number of new adhesions created.

Others here have had adhesion surgery- some failures and some great successes. Good luck!

Scott F, thank you for giving me the name of what caused my problem and letting me know that I belong to a club of fellow fecolithers.  Whoopee.  Thanks to my fellow club members for telling me about your experiences. I called it Rocco; now I know it is called a fecolith (or fecalith).  

I hope everyone is well, and, Not your average gal, I hope you're doing ok.  (I was diagnosed with adhesions, too, but when they went in and looked, the adhesions were really minimal; what they found instead was a twisted intestine that was ready to die.  So.....that was a different than the fecolith, but I wanted to know if Not Your Average Gal's doctors have seen the adhesions, or if it is an educated guess from the symptoms.  For me, the docs have told me I had adhesions, but both times they suspected it, it turned out to be something else (and quite serious, too.)  

Scott F posted:

Aaro, the issue with adhesion surgery isn't that it never works, but that it often fails. IMO it's well worth trying if you're reasonably confident in the diagnosis and your quality of life is low. I'd choose laparoscopic surgery preferably, to try to reduce the number of new adhesions created.

Others here have had adhesion surgery- some failures and some great successes. Good luck!

Yeah its the not knowing and the fact the surgeon isnt happy doing surgery that i hate! As he believes by the time im 60 id of had to have loads of operation because the will come back at so me point... Its my only option if this no solid food diet doesnt work Then its surgery but i also have a narrowing over the stoma site why i dont know! I just wanna feel well generally not asking much, thanks for the reply too

Maverick, yes, it is definitely adhesions. I've already had one surgery for them and my belly is chock full of them unfortunately. I'm surprised I haven't had more obstructions...only two confirmed so far which released themselves with conservative treatment.  But I think they are starting to get the upper hand over me now these many years later.

Most adhesions don't cause trouble. Sometimes they just are in troublesome locations. That's why adhesion surgery can work at all, since the troublesome ones can get cut and the new ones may not be a problem. 

Aaro 123, I was still feeling the sedation from my last procedure so I didn't get the gist of what you were going through.  I read it more carefully this time and see all that has happened.  I get it.  I am amazed by your strength.  I can't say I know  exactly what you're going through, but I do know the feeling of just wanting to feel good.  You deserve better.  I wish I had a magic wand, but all I can say is I wish you the best outcome possible.  

Maverick Plus posted:

Aaro 123, I was still feeling the sedation from my last procedure so I didn't get the gist of what you were going through.  I read it more carefully this time and see all that has happened.  I get it.  I am amazed by your strength.  I can't say I know  exactly what you're going through, but I do know the feeling of just wanting to feel good.  You deserve better.  I wish I had a magic wand, but all I can say is I wish you the best outcome possible.  

I wish there were more local groups here and people like you!  Thankyou I  feel if i had 4 close friends who also suffer we would get through together but its such a horrible thing to be alone with because as my surgeon said its for life! He said if its cancer i cut out we treat, you heal recover and live well hopefully , but cronic pain or adhesians or inflammation is for life! They reacure they get twisted you lose a bowel a gallbladder a rectum its so under rated on impact of sufferers the unlucky 1s who surgery doesnt help or treatment doesn't help, over here its finally getting classed as a dissability Hallelujah they may help us more now

Thank you for the kind words.  I wish the same.  I realize how I've withdrawn a lot because of my illness.  Yes, it's for life!  Unless one has a chronic illness, people don't get that a pill won't make it better.  I been lucky to have remissions sometimes but they have been few and far between.   There always seems to be something unexpected around the corner.  At least we do have an online group to go to.  Thank YOU for being there, too.

Aaro123 and Maverick Plus: I appreciate what your doctor said about chronic pain and adhesions, Aaro123.  We don't realize when we have the surgery, that although we alleviate one set of problems, we end up exchanging it for another set of problems that dog us for the rest of our lives. I look back and think about how trusting I was of the doctor's advice all the time and for all the surgeries I had. I might have done one or two differently. Some others literally saved my life. But what's done is done. No going back for sure.

These challenges I have on a daily basis have altered my natural life on earth until I breathe my last breath in ways I never appreciated before, bleeding into so many areas from relationships, working (not) to using public restrooms. Seems I'm always apologizing for myself for being the pain the ass, high maintenance, always on the hunt for a bathroom person I am. I thought that would stop after the surgeries. Boy, was I mistaken! Amongst my family and close friends, I am the "butt" of jokes--in a fun way. They are never mean or insulting and we all have fun making fun of it--you gotta laugh or you'll cry. 

I know so many of us here go through this on a daily basis and we each find a way to deal with it in our own way. I guess it makes us real. And I suppose we can't get too uppity about ourselves with our digestive and butt problems. Ha ha! Maybe the real challenge lies in finding a way to become really okay with how we are now, not that I mean we don't continue to strive to find answers to our chronic pain, illness, inflammation, adhesion, etc., issues, but just accepting of ourselves in the middle of it all--at least speaking for myself. 

Then I wonder how much personal stress levels (and the physical problems are enough to cause lots of stress in and of themselves) play into creating more of everything. It helps me to find ways to relax and de-stress by meditating or talking to a good friend, listening to music, writing, being in nature or just taking extra good care of myself. Anyways, these are just my thoughts. Maybe it helps to build character in us or just make a character out of us, and we can be here and be real with one another because we've been there, too.

Music and yoga and meditation help me.  I also paint sometimes, too.  Reading novels is a good escape if the pain is not so bad you can't ignore it.  We all need to find ways to de-stress.  It is essential to our mental (and physical) health.  Thanks for the reminder, Not Your Average Gal. 

Couldn't agree more, Although the dissability side of my illness really effects the dating side  because unfortunately not many women or men want a weakend non working guy/girl that now hates food, is very lethargic, in contant discomfort and owns the toilet, examples -Hey lets go to the restaurant where ill watch you eat a giant burger and chips, or lets go for a really long beach walk where ill probably dehydrate and need to know theres a toilet nearby, or any active stuff is out for me due to the surgery, kinks adhesians , so my date would consist of watching tv, painting or reading with a massage good company and long talks, only the minority of girls would cope i can tell you, most say it gets boring after a year and i can totally understand them which is what makes it worse i suppose...So Oh well i learned to be happy go lucky, love yourself and your family and put yourself first for a change and thats all you need in life the rest ie health love..will come after