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17 replies

Needing help with fast transit time

S slinkyMember
Hi everyone,
I am new here and in need of help. I had my total colectomy with jpouch created and loop ileostomy done on July 1, 2013. I have not been able to be reversed due to many complications. Cuffitis, pouchitis with bleeding,and very fast transit time. We have gotten the Cuffitis and pouchitis under control but can not get the diarrhea under control. I am so sad and frustrated. We have tried everything: Imodium, lomitil, codeine, pepto, tincher of opium but no luck. I can not drink without it going staight through me into the bag within minutes. It's really crazy. I am now thinking it's a food intolerance but can't figure out which food?? I prepare my food from whole food (nothing boxed)so I know what ingrediences I'm eating. I'm thinking its Fructose maybe since I'm also lactose intolerant so I am on the FODMAP diet right now. My Dr says he can't revere until we figure it out or I will not be able to handle the diarrhea in the Jpouch and have to go to the bathroom 20x a day. My output to the ileostomy is about 1500ml (mostly liquid) per day. Has anyone else had this problem? Also, how long did everyone wait to get reversal? It is now been 9 months for me. I'm scared if we have to keep waiting the jpouch won't work. Has anyone had terrible diarrhea and not been able to drink fluids and after reversal gotten better? Sorry so long. I'm just feeling so desperate.
Thanks, jeanie
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D dtmackMember
Good morning,

I am obviously not a Dr. so take this for what it is worth.

I would be getting a second opinion.

The loop ostomy is notorious for fast transit time. When i had mine, it was located about 6 -9 inches below my stomach. When i ate or drank anything, it was out in 20-30 minutes max. I had a voracious appetite, ate 10-12000 calories a day, and lost a pound every 3-4 while waiting for reversal. By the time i got reversed, i was under 160 lbs.

Once reversed, it changed dramatically. It took about 3-6 months to get used to things, but i went from going about 10 times a day to maybe 4-6. I gained weight, got strong, and felt amazing. Loop ostomies can be very difficult and based on what you are saying, minus all the food allergies, it sounds like mine.

I hope this helps.

Best to you.
Scott FScott FMember
I don't disagree with the challenges of a loop ileostomy. OTOH, *if* it's a food intolerance you'll be more likely to pin it down with an elimination diet than something designed to control bacterial growth (like FODMAP). Did you have any sense of specific food intolerance prior to your surgery? I know it can be hard to tell when you're sick.
S slinkyMember
Thanks for your reply Scott!
Before surgery I could not tolerate any food at all. Always had pain, diarrhea, and beading for years, so it's was hard to pin a specific food down. I am doing the FODMAP diet now but just started two weeks ago, so I'm sure I need to give it more time. I'm sure I have yeast and bad bacteria since I've been on antibiotics off and on a long time. I have Lyme disease also. I will do whatever it takes to get better. It seems as though fluids are the worst, even water. I have to sip very slow throughout the day but feel so thirsty.
Thanks again!
P PluotMember
I agree that a second opinion is warranted.

Because I had three surgeries instead of two, I had the benefit of experiencing the end ileostomy as a much more accurate predictor of my j-pouch output. My end ileo worked very well and put out softly formed stool the vast majority of the time. In fact, I told my surgeon that the end ileo output was more formed than anything I had seen since prior to my diagnosis.

Conversely, my loop ileo had much higher output. while not as severe as yours I required a high daily dose of imodium in order to achieve roughly 1500 milliliters of output per day. Despite this since my reversal my output has return to being much more similar to what I experienced with the end ileostomy. I do not require medication to manage my frequency at all.

of course no one can guarantee what your personal experience will be. However I think that you might benefit from being examined by a surgeon who might have experience with similar cases in the past. Your surgeon is certainly only working in your best interest but I would not be fully convinced that transit times associated with a loop ileostomy are sufficient to predict problems post reversal.
S slinkyMember
Thank you Liz!
All of you have really given me hope that in the end this could work out. Sounds like your output was much like mine. How long did you wait for your takedown altogether? I hear a lot that the first year can be difficult as the intestines and jpouch get used to things.
Should I expect to be close to a bathroom at all times?
J JJAMember
WHat about fiber? Like metamucil capsules? I take 20-30/day (spaced out) to thicken my stool to help me deal with fecal incontinence.

I would NOT take that many with an ostomy Smiler but they do create a gelatinous characteristic to the stool. When my son (normal bowel) was struggling with Diarhea she suggested Pectin (like sold in the jelly supply aisle of the grocery store) for the same purpose.

ALso agree that my temp ostomy had an insanely fast transit time. My pouch is much more variable-anywhere from an hour to a day.

And the bottom line is that you WILL have diarhea with a j pouch. I had the most watery, explosive stools on the planet post-pouch.

I would experiement a bit more and/or seek a second opinion-I have not heard of fast transit with the temp ostomy being a contraindication for the pouch before.
R Roni*Member
quote:
I have not heard of fast transit with the temp ostomy being a contraindication for the pouch before.

Yeah, it sounds like you need to see another doctor, although that may be difficult as most surgeons aren't going to want to touch you at this point in the process. I don't think docs like taking other docs patients on like that. This happened to me as well and put me in the er a few times due to dehydration. Because of this and not being able to keep a bag on, they did my takedown after 2 months.
Maybe you should ask your Gastro doc to help you out with a decision.

-Roni*
S slinkyMember
Thank you JJA and Roni,
I have tried Metamucil in the powder mix, but couldnt tolerate it because of having issues with sugar and aspartame but i will give the fiber caps a try! Good to know for after takedown too.
Roni, I am going to have another sigmoid and endoscopy by my GI dr tomorrow just to make sure everything looks ok, and then I will discuss going forward with both of them. I also have made a few trips to the ER for fluids.
Thank you both for your help
W wsh6745Member
Slinky - I have had very high output as well. I only have thicker/slower output if I eat oatmeal; otherwise, if I eat, by the time I leave the table, my bag is totally full. I can't even clear the dishes before I have to go empty. I am then in the bathroom about every 30 minutes until everything is cleared out of my system. I take Benefiber before each meal and that seems to help a little bit. I also take 2 Lomotil before each meal. I'm not sure if that does anything or not; it doesn't really seem to but then I always think that maybe it would be worse if I didn't take them.

I have talked to several people with loop-ileostomies and it seems like they have all had high output with pretty liquid stool until they have the reversal. I am surprised your doctor would postpone the reversal because of it. I have also read several people on this forum having earlier reversals due to dehydration. I believe one lady even had the reversal at 4 weeks because she kept ending up in the hospital with dehydration. She did fine after the reversal. I hope you are able to meet with your doctor soon and get the reversal scheduled.

I am scheduled to have my reversal this Friday which is exactly 10 weeks from my first surgery.

Good luck and I hope you are able to get your reversal scheduled soon.

Wendy
DH Donna HMember
This is really confusing to me. I have a loop and my transit time is very fast. I have to empty immediately after I eat too since my bag gets so full. My surgeon said he did not think that the end and the loop made much of a difference with transit time. Reading what you all said, it seems not to be the case. Hot beverages are insane with my system - i can go for a few hours after a cup of tea and I wonder where all of that liquid came from. I cannot gain weight either. Lomotil or Immodium doesn't seem to make a difference either.

Slinky, how do you procedures go?
S slinkyMember
Hi Donna ,
Seems like we have the same problem. I had my surgery on July 1,2013. Total colectomy with j-pouch construction all in one. I spent 3 weeks on the hospital prior to surgery to try to save the colon. I was very sick, malnourished at about 70 lbs on TPN, bleeding, and also being treated for adrenal insufficiency and Lyme disease so I did not go in strong at all. It had been a pretty difficult post op period. My skin under the wafer was a mess for months and I was so weak for months. And I had pouchitis and Cuffitis from day one. I am doing so much better now but still having this output problem. Since writing last week I have discovered I can eat meat!! Of all things this causes so much liquid! I can't eat fructose either or really sugary things. A 1/2 banana before each meal is helping. Believe it or not I found cheese is working too and I am lactose intolerant (I take a lactaid) hot fluids are bad for me too! Trying to stick to water but sipping slow throughout the day. This is frustrating. I want reversal but terrified I won't be able to leave the bathroom.
L liz11Member
try BENEFIBER - one huge tablespoon with every meal. its a different type of fiber than that metamucil stuff.

Also DO NOT drink when eating
Sip a true WHO electrolyte beverage all day.
DO NOT drink plain water.
DO NOT consume any type of hot liquids - coffee, broth, tea, etc..
remove ALL sugar from your diet
eat 5 small meals a day instead of 3 normal meals.
make sure to eat something "thickining" with every meal. Like rice, potatores, sourdough pretzels,, etc..
make sure you do the immodium to full dose and time it properly... two pills 30minutes before each meal and 2 at bedtime
same goes with tincture of opium
try NEXIUM (prescripton needed)

My ileo #3 was incredibly high output and I had to do all the meds I listed above and other rules. but it became manageable. Just have to be diligent.

also have you been checked for cdiff?
S slinkyMember
Thank you Liz11,
I have noticed I can not drink hot liquids!or drink with my meals. I wish I would have found this forum earlier!
I have been checked for C-diff multiple times and SIBO and both have been negative.
I will try what you suggest. I have not tried benafiber. I have cut out all sugar, and have been gluten free for 5 years.
Thanks for your help!
Jeanie
L LjzMember
Slinky, I just had my takedown March 14 after 2 months with loop ileo, that also had very fast transit and was all liquid. I had complications with blockages so could only consume liquids and luckily had TPN for nutrition and fluids. However, despite all liquid with loop ileo, my output now is controllable. At times it is all liquid, but still controllable! That surprised me! I am working with nurse to reduce # outputs per day, by solidifying. I take max dose Immodium, but I'm able to eat starches, while I realize that's problem for you. Timing of immodium, 30 min. before meal is important. Applesauce and bananas good too. Anyway good luck- just wanted you to know that liquid output does not necessarily mean incontinence. Hopefully, you will find that it's not all liquid after takedown anyway, and you'll find ways to thicken it so you aren't in bathroom so much.

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