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MB

Hi,  my daugther is having a terrible time with frequency. She's 1 month out from take down and still having 13-20 BM's a day. She hasn't gotten more than 3 consecutive hours of sleep since. We have tried the highest dosage of Imodium which did nothing, I asked to have her switched to Lomotil which at the highest dose worked a little better than the Imodium but not great. The surgeon suggested going back to Imodium and giving her more than the max dose, 4 caps/4 times a day!  No change.  

 

I was on a jpouch Facebook page and someone said the only thing that worked for them was taking both Imodium and Lomotil at the same time.  I thought I read somewhere you shouldn't do that but am willing to try if it is safe and if it will give her some relief!  Any thoughts??

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Scott FScott FMember

I wouldn't max out both Lomotil and Imodium, but that's just an opinion. The medications are similar enough in their mechanism that doubling up might not go well.

 

FWIW, that much frequency probably has less to do with bowel motility than with what happens when just a small amount of stool and water enters the pouch. I was encouraged early on to try to hold it a bit to "stretch the pouch." That worked well for me, but not everyone likes the idea. Is she able to hold it a bit longer than she currently is (and slowly extend the intervals)? If she'd be uncomfortable rather than have an accident, it's well worth considering - not every sensation warrants a bathroom trip. Other possibilities include normal recovery (this is a difficult procedure), spasmodic pouch, or even early pouchitis.

Scott F
MB mary bethMember

Thanks Scott.  I was thinking about just trying a smaller dose of each, not max. Like maybe just one Lomotil and one Imodium. It worked for the person on FB so I thought it might be worth a try.

You're right, there are a lot of times where only a small bit comes out but other times are more. She tries to hold it but once in a while she'll have an accident.  She was scoped and they didn't find pouchitis so that's good.  I asked about an anti spasmodic med but the surgeon didn't want to introduce another med at this time.  I hope it's just a matter of time and it will improve.

MB
U UjohnjCMember

hi mary beth I'm having same situation but with major butt burn also i can hold it for hour or 2 if its not a burn and longest I've slept is 3 hours at once also usually 1-1 1/2 hours seeing dr tomorrow was having good day yesterday only 4 bm till 5 pm then just had to go every 30-60 minutes for rest of night its very tricky to figure out  hope i do soon though good luck

U
MB mary bethMember
Hi John, yes very tricky and frustrating!  That's what happens to lily usually, does well during day then when she gets home it all starts.   I think a lot of it is food and she realizes that now. She went to dinner with her boyfriend and are some seafood dish with marinara.

I did end up giving her one Lomotil and one Imodium this morning, talked to a pharmacist and she said that should be ok. I feel like they know more about meds than the drs sometimes, I'll let u know.  We're taking a flight to cancun shortly for her spring break with soome of her friends/families.  I hope she can have a great time, not worry about leaking and just feel normal, She's earned it! I felt like I was packing for a baby again, so many supplies and meds but I'm prepared!

Hope you comtinue to improve!  You both will get there!
MB
MB mary bethMember
Oh by the way John, the functional med DO I took her to found a parasite in her stool. Symptoms are diarrhea and sometimes blood in stool!  I of course I freaked out because I'm wondering if that could have made her flare worse and if this could all have been prevented. He said not to go there, we will never know and just have to move forward. (  He said the treatment is flagyl which she was on for a week for potential pouchitis. He said that may have taken care of it and is retesting her.
MB
SpookySpookyMember

I would agree that doubling up is not necessarily the best option--if you are maxing out the dose on both. Many people do use them in combination, but not at the maximum dose for ea each.  Lomotil can also have a sedating effect, so it may not be the best option to take during the day, especially if she is going about her normal activities. Perhaps she can try Lomotil at night and Imodium during the day. 

 

I'm just wondering, though, has your doctor considered adding an antispasmodic, such as Bentyl, Levsin, or Buscopan? It's not uncommon to have a spasmodic bowel in the early post takedown period. If your daughter notices a big increase in frequency particularly after she has a meal, this may be the culprit. An antispasmodic will slow peristalsis and should result in fewer BMs. I believe you can take this in combo with either Lomotil or Imodium, but the particular dosages would need to be reviewed with her doctor.

 

If all that fails, has pouchitis been ruled out? She could have a simmering case. Increased urgency and frequency, especially accompanied by a feeling that the pouch is not completely empty, are common symptoms, as well as night time leakage.

Spooky
Last edited by Spooky
JeffsmomJeffsmomMember

Jeff had the same thing.  Major butt burn, no sleep, unable to really leave the house.  Funny thing is he would only tell the surgeon he was going 8 times a day!  I guess he didn't ask the question correctly!  I remember the surgeon saying that 8 times was excellent, that most people go a lot more than that.  As he put it, it's a brand new, baby pouch.  He said it takes about 3-4 months for the internal swelling to go down and for things to calm down.  Not sure what to tell you.  But then we were having complications with pouch leakage, only we didnt know it.  And we all know how that went.  Let me know how she is doing.

dianne

 

Jeffsmom
JourneyToWellnessJourneyToWellnessMember

Hi! It's a couple of years later and I'm wondering if anyone has follow up about what they tried. I'm in a similar position to Jeff and Lily. 3.5 months out from take down, looking for something to help manage while pouch takes time to adjust. Imodium didn't work, currently on 8 Lomotil/day, no more tincture of opium after bad reaction. Wondering about combining Lomotil and Imodium. Poichitis was ruled out but I am doing Pelvic Pt. Looking for more options and would appreciate any advice!!

 

Steph

JourneyToWellness
VeggiescottVeggiescottMember

 I'm three months post take down; I was on the max dose of lomotil for the first two months till I started eating a Metamucil wafer with every meal, it really helped a lot and I was able to get off of the lomotil. I tried the Metamucil capsules but they gave me too much gas, but the wafers seem to work fine. give them a try and adjust the  amount of wafers as needed, they come 2 to a pack. 

Veggiescott
EricaLeeJpoucherEricaLeeJpoucherMember

Journeytowellness, I take colestipol so that I go less. If the wafers don't work, maybe you could try colestipol or medication like it. Colestipol also absorbs acid too so that's always good. If you decide to try it, you will need a prescription for it from your doctor. Just letting you know it took almost 7 months for my frequency to be less. Now I don't take as much colestipol, so I think one day you will be going less too. 

EricaLeeJpoucher
EricaLeeJpoucherEricaLeeJpoucherMember

I got it prescribed because I was going the bathroom a lot and having diarrhea. Colestipol is normally used for lowering cholesterol but some j pouchers use it for pooping problems. Just letting you know the colestipol pills are kinda big because they're one gram each. Colestipol absorbs other medications other medications so take other medications an hour before or 4 to 6 hours after Colestipol. If you need help with anything you can always pm me

EricaLeeJpoucher
MB mary bethMember

Hi Journeytowellness, it's Lily's mom. Neither Lomotil or Imodium, even with high doeses did anything to reduce her stools. She was going sometimes 30x a day in the beginning and even the Dr said he didn't know if she'd ever go less than 10. I'm happy to say that almost 2.5 years post takedown she is only going 4-5 on good days. She will say that it all depends on what she eats. If she eats too late or too much fiber past about 7 she will get up more during the night. Unfortunatley she gets up at least once if not twice most nights but she seems to have gotten used to it. We went to Dr. Bo Shen last month just to get her established as a patient (not having problems thank God). He told her if she wanted to go less that she should eat an Atkins style diet. Lots of meat/protein and low carb and NO sugar. She already eats a Paleo style diet and doesn't want to give up her veggies, she says she's ok with going a little more. If she does splurge and eat sugar she notices. And anytime she has pouchitis "symptoms" its because she strays from her healthy diet. She will then load up on Florastor probiotics. She takes them daily but when having issues takes 2-3 pills 2 or 3x a day until she settles back down and that has worked for the last year or so. She's 20 now and I have finally let go of the reins. She's figuring things out on her own and is doing great. She believes (because of what she has experienced) that a healthy, whole foods diet and not getting stressed out is key to keeping herself healthy and pouchitis free. She has found yoga to be a miracle for her stress/anxiety and is now a certified instructor and will teach when she goes back to college this fall.  Anyways... my point is that it WILL get better so hang in there!! You will figure out what works for you over time. Be patient with yourself and the process. Best of luck to you! <3  Mary Beth

MB
JourneyToWellnessJourneyToWellnessMember

Thanks so much @EricaLeeJpoucher. That information is very helpful and I will definitely message you if I need anything!

@mary beth Thank you SO MUCH for sharing everything! It's really helpful to hear how things have worked out a couple of years post take-down and it sounds like she is doing much better and has great awareness about her body. It must be really hard for you as a parent going through all of this and also letting her take the reins. I was diagnosed at 25 and am 33 now, so of course it's taken a toll on my family as well, but I can't imagine what it must be like for a teenager to be robbed of those carefree times! 

It seems like time and patience are key along with diet and stress reduction. That all makes sense to me! It's hard to be patient after 8 years of illness, but I've been relaxing into the unknown better lately! (Yoga and meditation help me a lot too!) I've been thinking about making some major dietary shifts and it's helpful to know that paleo has been so influential in your daughter's success. I am definitely going to try paleo (it's similar to SCD which i was on for 4 years and it helped me too).

Thanks again for the support and wisdom. Be well and I hope Lily continues to thrive!

xo

Stephanie

 

JourneyToWellness

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