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14 replies

What would you do?

MysticobraMysticobraMember
I had my surgery over a year and a half ago.
The reason I bring this up is because I had a terrible day yesterday.
I never had any bacterial infections.  There is no blood.. Nothing.
Pouch does just not want to work right. 
I have had it checked several times and see my surgeon once a month still.  She has no idea what is up.  Everything is healthy.  But I guess I am not made to have a pouch.
I have to push hard to get anything out and sometimes very little comes out when I know there is alot in there.  I am gonna herniated or prolapse if I keep it up.  As soon as I leave the bathroom the urge comes back and I go back and very little again.  I will have an urge so bad I could empty right at that point but I feel it gurgle before I get there and nothing comes out... Or very little.  This has been going on for months and months.  I will hit a day where it all comes out and I will be good for a day or so and I start the cycle over again.
I must have went 20-30 times yesterday and all those times it never really emptied.  And as I wake today it still hasn't.  I know sometime today it will be a flood.  At some point which will be a great relief.  But I repeat this happens almost every time.
I know I have to go to the illeo but financially I cannot do that right now.  I am still recovering financially from the first one.
It will be a long time before I can do it.
I am at my wits end.  But have to deal with it.
No drugs help.  Antispasmodic helps a bit.  Lomotal just plugs me up and anything that thickens makes it worse.
Last night I was thinking I would be so much easier to just go in a bag.... And it would have been.  I am so tore up at that end.
I guess  this should be in the rant section.  But more see it here
Ya... Should be in the rant section..... I even thought at one time things were finally smoothing out. Now... I don't think it ever will.  It should be working by now.
Richard.
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MysticobraMysticobraMember
Yes... Been dilated half dozen times.  Nothing in the way or to keep it from coming out.  Just seems no matter what only a small amount comes out and it clamps down.  I relax it and it does not help.  This just repeats until it decides when it all wants to come out.  Which I guess is when it's so full it has to.
That's what it seems like.  This is all new to me.  Of course same as anyone who has had this surgery.  I feel at this point this is worse than dealing with the uc.
rachelravenrachelravenMember
Stricture was my issue with these symptoms, but you've been checked.  I'm ok now, but I self-dilate so as not to run into issues.

Could you have pelvic floor dysfunction?  I know they can do physical therapy/biofeedback for that issue.  There are ways to address it, if the case.

Is your output too thick?  Are you on thickeners?  Lomotil or Imodium?  Perhaps lay off them if so.  When too thick, I can't pass stuff easily, and I take OTC magnesium sulfate tabs to loosen things up (1/2 to 2 tabs). Also, small enemas loosen stuff, too, when things are really rough (I use a Fleets bottle, but I dump out the Fleets and use warm tap water). 

I'm sure these are not new answers to you. Wish I had better ones.
Last edited by rachelraven
MysticobraMysticobraMember
No.  I don't use anything to thicken.  It is my mind playing tricks and I think weird but it seems either the Pouch is tilted or I just unconsciously clamp down on it after a little comes out.   Have been checked several times and all is healthy.  That is what is sooo frustrating.  I have a very good surgeon. 
She cannot figure it out either.  I will get or ask for a digital dilation next time.  She will do it.  Again as for anything that thickens... I stay away.... I would  rather have straight liquid.  It is so much easier.  But sometimes I eat things that thicken some.  That  cannot be helped.
One question.  I don't eat alot of sugar.  Just a tad a day.  Couple three musketeers and some tic tacs... Love tic tacs..  Does any one think that even that small amount of sugar could do it?
I am not gonna eat any sugar as an experiment for awhile. 
Starting today.
Scott FScott FMember

Richard, I hope you can get this figured out. You don't say exactly how thick your output is, but (if it's thick) you might get some relief from thinner output (more water or Magnesium Sulfate, as Rachel suggested). You might try a tap water enema, again as Rachel described. Even if these are not acceptable in the long term, they may give you enough relief so you can calmly make longer term plans.

 

If your surgeon can't figure this out, it might be wise to get another opinion, even if she's a genius. She doesn't know everything, and she may not know how to fix your problem. You may have a mechanical pouch defect, or you may have a functional problem that biofeedback or pelvic floor therapy could help with. Good luck!

MysticobraMysticobraMember
Thanks Scott.
Output.  Last night it was chunky.
This morning it is completely liquid.
I will get another opinion.  There are four surgeons in the office and they do put their heads together.
She may be no genius but she is pretty darn smart.
She does.... And this may... May not mean anything... She does the most pouch surgeries I the DFW metroplex. 
It hurts down there so much I cannot do the enema.  I may try.  But I feel it moving now.
Thank you so much for the input.
I have some ideas now I will try.
I try to keep my output as thin as possible.
I live and work in the heat.  I drink 6 to eight bottles of water a day!  More if I could.  I am drinking constantly.  I know that is very important and it tops my list.
Scott FScott FMember

If it hurts too much to consider an enema, might you have an anal fissure? They can hurt so much that it's extremely difficult to poop. They are difficult to clear up, but there are definitely treatments.

 

Chunky is not so good. It's best to assess hydration not by how much you drink, but by how much you pee. Your urine should be light-colored, and at least a few times daily with reasonable volume.

MysticobraMysticobraMember
I urinate several times a day... 7-8...never really counted.
Clear except for early morning after I get up.  Which I expect.  Once I get going it gets clear.
As for the enema hurting all the hurt is on the outside.  I amnjustbsowwlen up from wiping.... And the acids.  Once I clear up I can do an enema.
That may be tonight.  I have not had the urge to go for about 7 hours. 
This is a good day today.  That's what is so frustrating.  The pattern it takes of being good for a couple days and absolutely miserable for a few days... I am at work so I have to get back to it.  Just a quicky post.... Thanks All!
C CeeeeCeeeeMember

So much of what we deal with is trial and error for each of us as individuals.  What does the job for one person may not work for another.  After reading your description of what is happening, I'd like to suggest you try the following:  Eat an apple once a day.....skin, included!  Whenever I feel "plugged" an apple a day does keep the doctor away, for me!  I'm thrilled I found a simple solution which works for me.   Best wishes!

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