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6 replies

Wits end.

MysticobraMysticobraMember
I've had another bad week.
One.. Two good days.
I work outside in TX.  103 degrees.
I have tried everything.
I do not have pouchitis or diff.
Pouch is fine but won't work.
Keeping this simple.
I am at my wits end.
I get home from work and am so tore up down there from going I just go to bed to escape the pain and all that.
I thought I had it under control.  Nope.   Don't. 
Example.  And this will go on for hours at work.
It starts with the urge to go. 
I operate a fork lift loading and unloading trailers for a large national company.
I will have an urge go to the bathroom and little comes out by the time I get there.  I swear as soon as I get back out in the heat and sit down on the lift truck the urge comes back.  I go back in to the bathroom but on my way I can feel it gurgle and move so by the time I get in there very little comes out. 
This goes on for hours.  Everyday!
I had one day Tuesday I blew everything out in a five hour period.  My goodness it felt like I drank a bottle of Tabasco sauce.  Serious.
Wednesday I didn't go all day at work.  Not once.
Thursday and Friday it was back and forth all night.
I am so tore up down there it's like a foreign planet.
I don't know how long I can do this before I go insane.
I quit eating all sugars.
All I eat is peanut butter and jelly sandwiches and ground Hamburg.  Tator tots and gravy.  I drink naturally sweet juice.
And a sausage croissant with half an egg.  That's it.  I did have pork ribs.  I drink water all..... All the time... Nothing else but a bit of juice.  This is my life now.
I think it is worse. Now... After surgery.  I don't want a bag.  I don't want surgery again. 
I am losing weight again.  Lost 50 to begin with gained 20 back and have lost ten of that in the past couple months.
I know... I need to see the surgeon.  Be scoped.  But I know everything is ok.  There is no bleeding.  It would be a waste of time.
Even if I can go I have to push every time.  There are times it just comes out.  90 percent of the time I have to push and hard.  I will eventually herniate  myself. My whole gut are hurts from it.  I am so tired of pushing.
OK.  I vented. 
I am just exhausted from this.
At a minimum... Thank you for just reading and listening.
I know the only thing that will cure me is a bag.
And sometimes while going through this I think how much easier it would be because it would just go in a bag and I wouldn't even feel it. I had a bag for a short while.  Didn't like  it of course.  But it was easier to just let it go in there.  But I also know that has its problems.
I will quit rambling.  Because I could go on.
And most of this will not make any sense.
Thanks again for the listen.
Richard.
Last edited by Mysticobra
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NS Nora S.Member
Man, I'm so sorry that you are going thru this!  I'm due for the 2nd surgery to make the pouch in a week.  The bag is easy but I too hate it!!!!!!  Hang in there, are the surgeon just to rule all out, and above all, breathe!  I drive a forklift too so I know what you mean.  Before my initial surgery it seemed as soon as I sat on the forklift I had to go, get to the bathroom and it had passed, horrible viscous cycle!!  I was afraid to sit for a long time!! Hang in there!!!
MysticobraMysticobraMember
Scott... I am going to ask about it. 
I guess it wouldn't hurt.
The  am loosing my appetite as I know if I eat I will start the cycle all over. 
As soon as I eat the last meal or the meal before is working itself out.  And it puts me through misery for hours of going back and forth.  It won't just come out all at once.
I will ask about the antibiotics.
Ya... This... Hot weather and a forklift  found don't mix well on most days... Lol.  Gotta have a bit of humor.
Thanks.
Just to add.
I do believe I have IBS on top of this.... It's gotta be.
Last edited by Mysticobra
TE MarieTE MarieMember

There is something wrong with your pouch or you wouldn't be in such hell.  You need to see your GI or surgeon and get their help.  Have you tried calmoseptine for your butt burn?  It is hard to figure out what to eat and when. Have you tried Imodium and/or metamucil? Is there any other position that you can do, where you work, that doesn't require all of the pressure on your j-pouch?  I know asking about that is usually easier said than done.

 

I don't eat much meat anymore but when I do it's chicken or ground beef. I wish I liked fish but have a greater aversion to it than I did before my surgeries. Have you tried yogurt?  I also like smoothies with a protein powder, almond milk blended with some fruits and veggies.  I didn't think we should automatically do enemas on a daily basis but there are some of us that need to.  I forget the name of the guy here that does one daily and he has no problems. I think they are easier to do with my bidet.  

 

I hope you can get into your doctor quickly.  If the front office won't get you in soon then ask to talk to your doctor's nurse.  By explaining to him/her how bad things are they usually can get you in right away. Most doctors have open times in their schedules for acute patients needs - like yours.  

 

You are going to get better and I hope it will be soon. 

 

MysticobraMysticobraMember
Thank you all for the replies and suggestions.
I really do appreciate them.
It was suggested I ask for an antibiotic.  Well.... I had some from a previous problem.... Same problem so I took one and it wasn't three hours all the grumbling and cramping and running back and forth to the bathroom stopped. 
And as I wake today I am in no distress.
I just find it amazing.
Coincidence?
Could be.
I don't know.
I am making an appointment tomorrow.
I have to let her know what is going on.
But as I wrote in the initial post I was at my wits end.
I felt I was getting at the point of no return and then there would only be one solution. 
I certainly am in a better place mentally now than I was.  We all know how that is when you have to go through this for weeks.
It wears you down bad.
Again I thank everyone who replied with suggestions.
I do have one question.
Has anyone seen improvement so quickly?
I had a similar response to my first infusion of remicade a decade ago.
I was so sick then.  A point that if it didn't work surgery was the only option.
After the three hours it took for the infusion I felt a difference immediately.  I told the nurse there that.  She said it was impossible to know that quickly.  But I know what I felt then and it worked like a charm for years.  Eventually it quit working because I had to stop because of a hernia surgery and when I went back on it.... It  never worked again leading to where I am now.
Last edited by Mysticobra

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