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Hi j-pouch friends,

Quick update from me...

My takedown went smoothly on July 31. I spent four days in the hospital to transition to solid foods. After leaving the hospital and getting off of IV fluids, my bathroom trips dropped quickly from ~12/day to my current norm which is 5-6. It takes me about 10-15 minutes each time I use the bathroom to make sure I empty my pouch as much as possible. I have a very small amount of nighttime incontinence from passing gas (in my sleep and also it is MUCH harder to hold in gas when I'm lying down) but I'm living with it with just a folded soft tissue tucked in that spot. My BMs are still pretty liquid most of the time so I hope as they firm up the nighttime issue will resolve.

My biggest complaint right now is that I feel a lot of pressure in my rectum during the day and periodically feel a spasm there where I will have to stop what I'm doing (walking or talking) and just clench as hard as possible for 5-10 seconds until it passes.

In light of my great progress my surgeon has decided my disability leave time is OVER and I have to return to work next week. I guess success is a double edged sword!!

I'm mostly concerned about toughing out the spasms at work without looking like a crazy person (what if a spasm starts in the middle of a meeting?) and surviving BMs without a bidet. Since leaving the hospital I have only used my own toilet with my bidet seat (which is A-MAZ-ING). As a result I have had very minimal butt burn.

Any tips for return to work? Favorite products for BMs "on the road"?

A huge thanks to all here for all of the support this year... it has been a long journey, which is still ongoing, but for the first time I am starting to see the light at the end of the tunnel.

Replies sorted oldest to newest

suebearsuebearMember
Yes, I had those horrible spasms that would stop me dead in my tracks. It's temporary and will go away. If you have to be public about it; just tell your co-worker's it's pain from surgery. No one will delve further.

I returned to work after 3 weeks, was still recovering but work provided a distraction and got my mind off my butt; for the first time since before I had my last UC flare. You should be fine.

Sue Big Grin
suebear
V vstRNMember
Great to hear you are doing so well! I too had to go back to work at 2 weeks post takedown. It was not easy and I also dealt with awful spasms. I ended up taking Neurontin for them which I was on only for about 2 weeks and it pretty much eliminated the symptoms. As for any tips, ughh I still dread being away from my beloved bidet. Survival for work is a squirt bottle, Seventh Generation wipes and Calmoseptine. Good luck!
V
U UCWarrior2010Member
Wow, Liz!! So glad to hear that you are doing so well and will be returning to work next week. As others have said, the spasms and the pressure will reduce with time. I still get the spasms and feel the pressure at times, but it has become a lot more tolerable. Also, being distracted helps. I try to bear the spasms as long as I can so that I can extend the time between bowel movements. I feel these are my little victories against UC by delaying going to the loo Smiler
I'd say carry baby wipes with you to use when you don't have access to your bidet. Good luck!!!!
U
LesandiegoLesandiegoMember
Pluot,

Your symptoms sound a lot like mine, however, I am 4 months post TD. The spasms while walking still occur for me, but luckily my job is very sedentary. I did not have a job to return to (I was medically separated from my last job), but I did find a part-time job and I dread those “meetings”. But, now that I am more comfortable in my working environment, I am not so nervous during these meeting and when my belly noises act up, I just start tapping my pen or move around a little to mask the noise. Also, I work with a group of men and they tend to be loud during these meetings.

I wake up at 4am every morning due to overnight leakage. I have tried everything you have mentioned and it still does not help.

I take lomotil and bentyl twice a day. I have been on Neurontin for years due to residual effects from a neurological stroke. Never heard of using Neurontin for the spasms, but apparently my existing Rx does not help my spasms. I recently tried adding immodium at bedtime and it stopped the night time leaking only one night. I did not have leaking or the urge to get up at night for the first 3 months post TD, but now it is almost every night for the past month. It does not matter whether I have anything to eat after dinner or not, I still leak!

It is true that work is a great distraction and I wish you the best of luck on your RTW!
Lesandiego
rachelravenrachelravenMember
I was in nursing school 3 months post takedown. I made a commute to and from school. By that point, I wasn't needing anything unusual, and didn't need creams, etc. I DID find myself a "hidden" bathroom to use, or just really break rules and get up during class to use a bathroom, so the "noise factor" wouldn't be an issue, or embarrass me or others when I needed to go. I'm not so self conscious about that anymore, but I can evacuate everything better if I can cloister away and just get it all out at one sitting.

Continued good luck and good health to you!
rachelraven
PH playin hookyMember
Liz, it is great that you are going back to work so soon. The spasms will reduce in frequency and severity as time goes by. I returned to work after 6 weeks and it did help get my mind off of it. I was also concerned about the bathroom trips but it's not as bad now that the butt burn has subsided finally. Getting used to the bathroom trips away from the house helped me move on with life. My dr required my first week of work to be part time which helped. You might consider asking about this. I use wipes to help avoid the abrasive cheap toilet paper at work.

Congrats again on your recovery as you seem to be doing better than I am and I am 12 weeks out(not that I am complaining as I am getting put thru a crappy divorce in the middle of all this so I know that's not helping my transition any).
PH
CTBarristerCTBarristerMember
quote:
I'm mostly concerned about toughing out the spasms at work without looking like a crazy person


I am not sure exactly what is under discussion here. If you mean excessive motility this is a problem that is easily made to go away by taking bentyl, levsin or donnatal or anything in the so called anti-spasmodic drug class. I read other posts in which the word "spasm" is thrown out there very loosely to refer to both excessive motility and pain and other symptoms. Excessive motility after takedown is a common problem and it is easily treatable.
CTBarrister
P PluotMember
Hey CTB, I do not think it is excessive motility -- from when I've seen that under discussion here I think that is when eating seems to trigger multiple urgent BMs, right?

What I find is that every so often, sometimes every 5 minutes or sometimes only every hour, I feel a sudden strong urge to have a BM. It only lasts for a few seconds. During that time I have to clench and hold as hard as possible so that I won't have an accident. After that the urge goes away completely, so it isn't like I need to have a BM right then -- in fact I can have "spasms" like these on and off for hours without needing to have a BM. If I went to the bathroom every time felt I these spasms, I would have very little to actually empty from my pouch.

Les, sorry to hear you're still having so many problems. I've had somewhat increasing issues with incontinence as well -- I had my first full blown episode of incontinence last night. I was in a very deep sleep/dream and thought I was passing gas, but instead had an entire bowel movement in bed. It's very demoralizing and I really sympathize with what you're dealing with. I hope it is a one off and not the beginning of a pattern. I feel like my body *thinks* it is learning how to pass gas but it definitely does not know what it's doing!
P
CTBarristerCTBarristerMember
quote:
excessive motility -- from when I've seen that under discussion here I think that is when eating seems to trigger multiple urgent BMs, right


That was usually the case when I had it -it was triggered by eating. However, I don't think that there is any rule that motility issues are necessarily triggered by eating. The symptoms you describe could be random excessive motility and could be ameliorated by anti-spasmodics. My surgeon called it "spasmodic pouch". I had exactly the symptoms you described although they were usually triggered by eating a meal and then came in waves in the next hour after eating. You may have a more random motility issue, treatable with the same medications. Talk to your Doc about it.

For me the situation died down totally about 1 year after takedown. It is very common and my surgeon identified the need for anti-spasmodics immediately when I told him what symptoms I was having. The issues I had were 100% resolved by all of the meds mentioned above. They can make you feel a bit loopy and I determined Donnatal or Belladonna Phenobarbital had the least side effects on me.
CTBarrister
LesandiegoLesandiegoMember
Liz,

You are "excellent" at describing the spasm that comes in waves after eating.

Anyway, I am taking Bentyl twice a day. After dinner, I would say that I still experience about 3-4 waves of spasms (the clenching to avoid an accident). Always causes me to "moan" out loud or stop in my tracks when I am walking.

I am wondering if my spasms will reduce once I have my incisional hernia repaired. My belly is getting bigger by the day, yet my weight continues to drop somewhat. I believe my hernia (starts above the belly button from 1st emergency surgery) is causing a very narrow opening for food to digest.
Lesandiego
P phonix2gMember
Im kind of amazed that you feel that good 2 weeks after your takedown that youre ready to go back to work fulltime. I had my takedown March 23rd and I am still recovering and not quite ready to return to work. I'm guessing you must of had a flawless surgery and recovery. Unfortunately I was supposed to have a 2 stage laprascopic surgery that didn't quite go as smooth as expected. My first surgery was supposed to be 4-6 hours and ended up finishishing 10 hours later. Then 4 days later back in the operating room for another 2 hour emergency surgery due to a twisted bowel on my right side that turned my side neon green caused me septic shock and almost killed me. In between the emergency surgery and my takedown I was plagued with 3 different infections. I ended up having to have my last surgery open because he had to clean out the infections when he did my takedown. I was also extremely anemic for 2-3 months after surgery. So a total of 16 hours under the knife. Opened up when I was supposed to have a laprascopic surgery. Time spent in the ICU and 3 infections with drains hanging out of me. Still now have significant pain in my sides and also tool a toll on me psychologically. Like I said its amazes me that you are ready for work already but Im guessing you didn't have issues like that. My surgeon wouldn't force me back to work though he is basing it on how I feel and if I'm ready. Good thing for STD and LTD or I would be screwed. Good luck its nice to hear a success story like yours. I think you're a one in a million.
P

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