New Patient; J-Pouch Surg 03/26/2019

I'm sorry your spouse is going through all this.  New j-pouches take time to adjust - not what you want to hear, but know things will get better.  Some suggestions to help as you adjust: 1) Try to add some thickening things (soluble fiber) to his diet.  Examples: oatmeal, peanut butter, potatoes. 2) Begin using a fiber supplement like psyllium husks or Benefiber. It seems counter-intuitive, but it really helps to thicken up the stools.  Add them slowly or you may have a rough time with too much gas. (I take a Beano when I use psyllium.) 3) Ask your Doctor for a prescription for Lomotil. It is stronger than Imodium and personally helps me better. 4) Be careful with too much ibuprofen.  It can cause liver problems and I don't want that for you! 5) Remember you haven't had your take down very long and its going to take a few months for it to adjust.  Don't give up!  

Hope this helps a little.

I’ve had more success with psyllium powder (or wafers, if you prefer) than tablets (like Fibercon) or capsules. The powder seems to mix better with intestinal contents.

The Advil (or other NSAIDs) can cause problems, especially taken so frequently. It can lead to pouchitis.

Things should start to improve soon - for most folks butt burn becomes an unpleasant memory. You’re less than 4 weeks out, but I’d suggest he start to try to delay trips to the toilet (if he isn’t already doing so). This is sometimes called “stretching the pouch.” It has two benefits, if it’s done gently: 1) fewer bathroom trips causes less skin irritation, and 2) longer times between visits allows for more water absorption (and less liquid stools). You don’t say how often he’s going, but if it’s more often than about every 4 hours then there’s room for improvement.

Hi All -

Thank you, thank you, thank you for the info. He's making trips anywhere from twice an hour to every other hour right now and in tears from the burn. I've known Advil can be an issue, but was my first thought because of the anti inflammatory properties. Would Tylenol be a better option?

Another thing that I forgot to include in my original post is urination issues. Trouble initiating and keeping a stream. There are the rare occasions he has no problem. Urinalysis for infection has already come back negative. Surgeon believes it to be a result of internal swelling still existing. Any other guys had this issue? How long did it last?

thank you again, T

We actually tried the Lomitil and ended up back where we started.

Tovia-

Tylenol won’t do anything for inflammation, but it’s fine (when it works) for pain. Any anti-inflammatory is just misdirected if used for this kind of irritation.

Some people swear by Ilex paste as better than the other barrier creams. If you do a search of past posts for “Ilex” you’ll find a wealth of information.

I had trouble peeing for a while. As long as he’s able to fully empty his bladder this is something to keep an eye on rather than worry about.

Mostly he just needs to get the frequency down. Hourly bowel movements are trouble in all kinds of ways. It’s worth distinguishing between a sensation that means one *must* sit down on the toilet vs. an (unfamiliar!) sensation that can be safely ignored, at least for a while. This is important enough that the occasional accident (while getting the hang of it) would be better than never learning how to manage a J-pouch. Hopefully he’s been doing kegels many times per day. A well-functioning pouch ultimately creates no urgency at all, though delaying a BM too long can be uncomfortable.

Thought I would chime in on a few of these things.  Remember first and foremost it is a process!  He will get there! 

I agree with Scott...I always have tried to hold off going to the bathroom as soon as I have the urge for as long as I can and I am 17 years out and can pretty much hold all day if I need to.  Also helps build the muscles down there to be able to hold it.  I have actually never taken anything for loose bowel.  He should get to where he doesn't need it. 

Butt burn issue...I only take baths.  Do not use soap products on bottom and have found that if I clean with Balneol lotion and use the calmoseptine when I have burning it helps a lot.  I stopped having it pretty soon after I had my take down. The skin has to get used to the stronger bowel on the bottom.  Think of it like building a callus. 

 I think that he should get used to not using any kind of nsaid.  It is not good for the pouch and can as Scott said cause pouchitus.  I miss my Advil and alleve but it's not worth it.  Pouchitus is the Devil !!!!

I will add him to my prayer list!

Thank you everyone for helping and sharing with us.

Invest in a bidet

Thx Momma, already purchased and installed.

Tovia,

Advil, Motrin, all NSAIDS gave me a severe case of pouchitis years ago, complete with bleeding, urgency, frequency, liquid stools...in fact, it felt just like my ulcerative colitis days. I'd definitely stop the Advil. That could be causing major inflammation. It can lessen aches/ joint inflammation but it doesn't work as an anti-inflammatory on gut tissue. M.D. told me never to take any NSAID ever again. There's info on this on the web.

Rose

Wow, you sure want him to heal up too fast but as everyone has already said in their replies the process takes some time and the more natural the better. Everyone's different, some people heal in a week and some take upto 2 yrs but mostly the bms reduce after 3-6 months . I am 9 months out and tripping 3-4 times in daytime and 2 trips at night. The loose motions seem hell lot during initial days make sure to use some anti rash cream , I personally use sudocream . Tell him to practise lots n lots of kegels to strengthen those bottom muscles. Some fiber supp. will help him alot to bulk up but it takes a little time for the body to adjust to use of a fibre supp. so he may have some gas and increased urge to go .

Looks like you've got some solid advice. I'll add in that a shower wand can help clean the area if a bidet isn't working (sitz bath can help calm the burn as well).

When I first had my pouch, any sugary products would cause intense butt burn and liquid stool (I can eat almost anything now).  You might try going back to a bland diet for a day.  Slowly introduce new foods in case one of them is causing the burn or liquid stools.

Bananas can also help slow things down and provide a nice dose of potassium.

Yogurt, Kefir might help although this soon after getting your J-Pouch, dairy might take some time to process again.

Thank you again everyone for being so willing to share info and your experiences. We've pulled the Advil from the mix, dropped the Imodium down to one tab every 4-6 hrs, and added Citrucel powder to the mix (this was the bulking fiber recommended by the home care ostomy nurse when he had the temp ileo). His appetite is nearly next to nothing and he's said nothing tastes appetizing. I'm having to "negotiate" to get him to eat a few more bites.

I recall we had a similar problem when dealing with the UC flares and found it was as a result of Prednisone. Could one of the meds [Imodium, GasX, Pepcid, Fibercon (replaced with Citrucel as of this morning), or Percacet] be causing appetite and taste issues?

Pepcid can cause taste changes. I use Zantac.

thanks Scott, that's something to go on...very much appreciated!

Another thought crossed my mind, (I'm probably grasping at straws but) since we're basically talking about raw, irritated, broken skin, what about Neosporin+Pain formula to help heal the skin. Either in place of or in conjunction with the Calmoseptine and/or Desitin?

Hey. The first days after my surgery was hell because i went to the bathroom very often and the burns were so bad it felt like my ulcerative colitis was back. My stomi-nurse told me two things that i remember now: Hold it as long as you can (sometimes it feels like you can't hold it anymore, but if i give it some time the feeling goes away). Also use Inotyol for the burns. I live in Scandinavia so i dont know if you have this where you live, but it's a perscription free cream for psoriasis and eczema. You need to clean yourself thouroughly before you apply it, but it works wonders for me. 

Hi All -

Hope everyone had a great Easter and/or Passover. So this is the formula right now...

• Psyllium (Metamucil) (2 rounded tbsp with 8 oz water once a day)
• GasX (1 tab 2x / day)
• Imodium (2 tabs 4x / day)
• Zantac (1 tab 2x / day)
• Alternating Desitin and Calmoseptine for protection after movements

Some other things have come to mind...does anyone else have psych issues (like bi-polar, anxiety, depression, etc) on top of the J-pouch issues? Did you find the psych meds hindered or helped the frequency? There have also been some "accidents". Whats been your experience (as far as time goes) getting them under control?

Thank you again everyone for sharing...

It depends whether or not the accidents happen at night. I stop eating at least 3 hours before bedtime, so that i get to sleep uninterrupted for at least 6 hours. I dont have any experience with accidents during day. I go to the toilet before going out. When im out i like to be aware of where the closest toilet is. Some cities have toiletmap apps that shows you where the public toilets are etc.. There is no big secret to holding it in as far as im aware. Maybe sitting still or lying down can help holding it in.

I've reached the point of desperation...seeing him writhing in pain and tears has me grasping for every straw I might be able to reach...has any one tried anything like Bactine or Lidocaine? How bad was the initial sting and how long before the numbing kicked in?

I had my j pouch surgery in 1985 and diagnosed with depression and anxiety in 1988. I've taken antidepressant medication since. It helps with the frequency, as it causes constipation in a non j pouch person.  I still have bouts of depression and anxiety and attribute it to my chronic medical condition. 

Good luck. You sound like a wonderful supportive spouse.

Accept It posted:

I had my j pouch surgery in 1985 and diagnosed with depression and anxiety in 1988. I've taken antidepressant medication since. It helps with the frequency, as it causes constipation in a non j pouch person.  I still have bouts of depression and anxiety and attribute it to my chronic medical condition. 

Good luck. You sound like a wonderful supportive spouse.

Thank you. I appreciate everyone's candor.

Around 1995 I was diagnosed chronic depression and anxiety, we met in early 1999, and in late 2002 (I think it was) he was diagnosed as bi polar with anxiety. I've been very glad to see the conversation around mental health making its way to the foreground in the US. Even losing some of the stigma such diagnosis carried for so many years.

I'm finding the depression, anxiety, and bi polar have been a big hindrance in this whole experience, but we're both doing what we can...having all of you guys to talk with and vent to has been a help for me. He's still trying to get someone to talk with on the phone thats been through this...