I’m only about 5 months post-op so I’m not an expert but I definitely remember how I felt at 2 months out.

- I didn’t really start sleeping though the night until month 4. Some nights I still get up just because it’s more comfortable to just empty it. But I also had a high output ileostomy and went to the bathroom during the night with my Jpouch. You can email Rosemary to see if it’s ok for you to sometimes sleep with the drainage bag. I sometimes do when I have something important to do early in the morning and can’t get to bed early. 

- Yep , Kpouch and bladder are next-door neighbors so...

- Let me know if you find a cure for gas. Sometimes GasX works proactively but not if taken for a long period of time. Walking helps. I’ve given up way too much over the years to give up soda - so I just deal. 

- Yes, the cramping is your sign that it’s time. The pain gets better but you’ll always feel that pressure. Rosemary put me on a 4-6 hour schedule and I am much more comfortable now. I was having trouble intubating so Dr. Dietz agreed with emptying more frequently. Your pouch will stretch over time. You don’t have to suffer in pain to make it stretch. 

Hope this helps!  Don’t hesitate to email Rosemary or call the Cleveland office. They don’t mind and are very helpful. 

Best,

Shavon

I had major gas pains the first few months too. Someone suggested Beano and I take that before lunch and dinner each day. It seems to help. Also, it may help to chart what you eat, not just being aware of when you eat. You may find dairy or something bothers you more than other stuff. 

Also, I’m about 6 months post takedown (final surgery) and I still get up 2-3x a night. It’s not idea but it is what it is. I figure the better than having an accident. I’ve got so used to getting up, I just keep a nightlight on in the bathroom- i barely wake up to go to the bathroom, and just jump back in bed. 

You asked if Imodium would help. Are you taking any now? Usually it’s something the doc prescribed after surgery. That has helped me a lot and slows things down. You can also try Metamucil - slowly introduce that into your diet- if you don’t want to add more medicine like Imodium. Either way, check and see what your doc says first. 

Hope things get better. 

If I empty my pouch just before I go to bed, I don't usually have to get up to empty it. I do, however, get up from 1 to 3 times a night just to pee. I was advised by my doctor to drink 10 to 12 cups of water. That's a bit tricky sometimes but if I can finish most of it way before I go to bed, that helps. I don't need to pee so much in the night.

I get gas because I have post nasal drip. I'm always clearing my throat because of the drip and in doing that I swallow air so I sometimes get gas.  The worse the PND the more gas. Unfortunately, allergy and sinus meds do nothing for the PND. And decongestants only dry out my mouth and do nothing for the PND.  I've seen an ear, nose, throat dr and he said there was nothing to be done. So I stopped wasting my money and stopped buying any more pills. I did get a prescription from my primary but when I looked up the side effects that, scared me a lot so I never took it. I have in the past used a nasal rinse but that has very minimal effect. 

If I just pee, it's not so bad. I don't have to wake up as much. But I feel I have to be more awake to empty my pouch since I don't want to injury myself. Unfortunately whenever and for whatever reason I get up sometimes I can't get back to sleep and that's a problem. 

I know when there is a lot of gas in my pouch as I can feel it. I try to empty as soon as I can because if I don't, I have a hard time intubating. And when I intubate there is a lot of air/gas that comes out. And I do get cramps when it's time and really full of stuff/air.

When I have a problem intubating, I take a deep breath and breathe out slowly and try to relax. Once I can do that the tube slips right in. 

Usually, I pee first and then empty the pouch and usually pee after as well. 

I have not taken imodium or gas X since my pouch. Other than vitamins and 2 prescriptions (for other problems), I try not to take much else mostly due to cost.

As I recall my doctor had me on a schedule during the night. This is from the instruction sheet given to me by my doctor. This is the schedule: week 1, day; every 2-3 hours, night; every 3-4 hours, week 2, day; every 3-4 hours, night; every 4-5 hours, week 3, day; every 4-5 hours, night; every 5-6 hours, week 4, day; every 4-6 hours, night; every 6-8 hours, week 5, day; every 4-6 hours, night; none. "After the fifth week, you will catheterize yourself about three to five times a day, allowing for some flexibility. This flexibility depends on your daily schedule, (i.e. the times when you awaken, eat meals and go to bed); your food and fluid intake, and a feeling of fullness from the area of your pouch."

I hope this all helps. I'm sure you'll get into a routine and figure out what your body is telling you. If you have any questions, check with your doctor. Good luck and Godspeed. Have a beautiful day. Mary

Bubba1028 posted:

I had major gas pains the first few months too. Someone suggested Beano and I take that before lunch and dinner each day. It seems to help. Also, it may help to chart what you eat, not just being aware of when you eat. You may find dairy or something bothers you more than other stuff. 

Also, I’m about 6 months post takedown (final surgery) and I still get up 2-3x a night. It’s not idea but it is what it is. I figure the better than having an accident. I’ve got so used to getting up, I just keep a nightlight on in the bathroom- i barely wake up to go to the bathroom, and just jump back in bed. 

You asked if Imodium would help. Are you taking any now? Usually it’s something the doc prescribed after surgery. That has helped me a lot and slows things down. You can also try Metamucil - slowly introduce that into your diet- if you don’t want to add more medicine like Imodium. Either way, check and see what your doc says first. 

Hope things get better. 

Bubba do you have a Kpouch or Jpouch?  Your advise sounds like you have a J. I don’t think a Kpoucher would ever want to use Imodium or Metamucil to make things thicker and more difficult to pass through the catheter. I did those things when I had a Jpouch. 

mary—I think that is all very good, helpful information for Reenie. I empathsize what you said, that one will figure out their routine.  Reenie, you are still only two months out and considering the first month was the 24/7 catheter you haven’t had much time to develop a routine. It will come in time, the patient.

A couple of thoughts re sleep. You may be following all of these already. try not to eat for several hours prior to bedtime. Even if you have to get up to pee it’s less disruptive and you’ll get back to sleep easier. Are you irrigating, especially prior to bedtime?   have your Electrolytes been tested? Every time I’ve been dehydrated I have insomnia and dehydration is related to electrolyte inbalance.  With the J pouch I never had a problem with dehydration but it has been very serious with the K

Gas is caused by certain foods,  taking in air, bacterial overgrowth (?) and various other reasons. It can be helpful to keep a food log augmented with gas experiences and just know that if you really love those foods that cause gas that you’ll have to empty the pouch  sooner or more often. That’s not a bad thing. a straw for dinking, or a lot of talking can also cause gas. I’m sure there are other reasons, but I haven’t  had reasons to experience them.  

 I hope things settle down for you. Keep us posted please, Janet 

Hi 

Reenie and all, I am at 9 months and have to intubate about 8 times in 24 hrs.

High level of gas makes intubation almost impossible for me, except lying flat, so I was advised to clear it more frequently to avoid that.

I have not done any carbonated drinks since 2005! I also need to maintain a very low fiber diet to keep the flow from clogging constantly.

GI feels I may improve some, but I have IBS  issues along with this, so maybe not.

Light white grape juice and as much water as I can stand help a bit.

The sleep 😴  issue, hmmm no ideas on help there, just keep it thin so it goes fast when intubation gets.

Yes, sometimes you just need to pee bad.If you go it relieves pressure on the pouch.

By the way, does anyone else have lots of belly butt  drainage? I go through Hugh amount of pads and covers?

Good luck to you and keep smiling 😎

Janice 

reenie and janice--have you checked out sharon's posts on diet?  she has gone through the worst of everything and has figured out what food works and doesn't.  and she lands back on her feet and smiling so i think her suggestions are worth considering.

when i had probs intubating, due to the hernia, the doc suggested i stand and lean ever so slightly forward.  it works.  obviously crimp catheter!  pee before you intubate, even if you don't think you need to, as that eases up some pressure on the valve.

as for clogging, when i've eaten food that are too fiberous or thick i use the size  34 cath instead of the usual 30.  i took advantage of the 34 being stiffer and have enlarged the two ports.  food i shouldn't have eaten zips through.

bacterial overgrowth, known as SIBO, causes gas.  it's not the easiest diet, but the lowFODMAP diet can help you identify which food is causing reactions.  one can get tested for SIBO, although the dietitian told me that the elimination diet is a better way.  was on it for a year prior to the k surgery.  because my sibo and pouchitis were so severe i flush out almost every time i intubate, as per instructions of cleveland clinic nurse.  not sure if that's what has prevented any reoccurrences but i've been clean of both problems for over two years.  yeah!

hope this helps, janet

Hi girls,

Welcome to the club! It is a very elite and special club that has some very basic "rules for survival"

1. What goes in, must come out! And in our case through a 12inch tube with 3 flute holes! So Chew chew chew!

2. Certain foods are "friendly-enemies" meaning they taste great together but do not digest well together. I separate my carbs/starches (bread, cake, pastry, pasta, rice, potatoes ...) from my proteins  (meats, fish, chicken, seafood, eggs...) because of their different digestive times and acidity needs...so I can eat a steak with salads or pasta with tomato sauce and salad but not both together. Less gas, faster and better digestion...easier output.

3. Milk and dairy are not your friends.

4. Corn, peas, beans, pineapple, peppers and a few other rough foods are off the list for now...try very small quantities in about 1 yr if you like.

4. No beer or sodas for 1 yr...then you can sip a few...but not yet.

5. Whole grain breads are more pouch friendly than whites. .all white flour products turn into wall paper paste in your pouch and cause unnecessary difficulties in intubating. 

6. Your pouch is a baby. Treat it that way! Be kind and gentle with it and your valve. Do not yank or tug it. Stop eating 4hrs before bedtime. Your pouch will grow in time...slowly. cramps are normal. Keep a journal of what you eat, when and with what...it will allow you to better understand what You require and what works. I am still learning after 39yrs.

Always ask for help when in trouble!

You are all brave and courageous pioneers ...be proud of yourselves.

Sharon