Hi again! I feel so bad for my husband. He is not improving at all. His surgery was 6/28 and he has not slept but 20 to 40 minutes at a time as he is constantly going to the bathroom all night long. Could it be something is wrong? Lying down position (sitting up seems to help slow the frequency)? Not eating right or at right time? Did any of you go through this, and if so, for how long? He can hardly walk, as his insides hurt so much, his rear hurts, and he feels like everything is going to come out when he stands or walks--including his insides. He goes to doc on Friday, but he's so discouraged. He hated the bag (had for 9 months. First one was fine, second was hell(stoma broke off in hospital and was flush with skin, leaked all the time, and had to be changed everyother day--they had to move his stoma from right side to left for various reasons, so he has had a rough 3 months)) He said he wished he never had the surgeries. I am really worried about him.

Please advise. Thank you so much.

Sorry to hear that about yr husband

well, the 1 month after clouser is very bad so don't worry this could be normal

try to feed him potates (not fried) and all things that helps to thickin stool

Finally try some Imodium

but ingeneral i guess there is nothing to worry about

Wish u luck

After reading many posts, it seems he is opposite of most--goes about 6 times during day and at least 12+ during the night. Is this, too, normal for the first month? He tried imodium, but isn't being constant with it.

Thank you for your post. It does take a bit of the worry away.

you said that he close it in 6-28 (1 week ago) for me and for the most here the 1st 2 weeks was from 20 to 30 times per day

6 times per day takes time (offcourse everybody is different)

after three month with my S-Pouch (more bigger) i used to go from 6 to 8 times and somtimes more

Lisa,
What is he eating?
Try small portions. Eating dinner early (before 6pm) may help too.
Foods that we found beneficial in the first 3 months: plain yogurt, oatmeal, oatmeal cookies, organic soft white bread, organic milk(on oatmeal), ice cream (vanilla only), chicken broth and or creamy chicken soup, potato chips, mashed potatoes, peanut butter, poached or grilled plain chicken (4 wks after takedown) and we pretty much kept to that diet for 10-12 weeks. Progress was slow but steady. Walking and daytime naps help too. And you may want to try probiotics slowly and measuring your results. Avoid carbonated beverages, high sugar content foods, veggies (esp raw ones) and all artifical sweeteners for now.
Good luck and hope he feels better soon!

I'm having similar problems. I have a 1-step IRA (no pouch), and my nights are just like fights for some hours of sleep (in a row). I'm six months post surgery now, and things really haven't improved regarding sleep. I'm now taking imodium before going to bed and opium tincture at night, which sometimes helps for several hours, but I haven't slept through a single night ever since surgery.

Don't want to discourage you, though, it seems like most jpouchers are doing better than that, so you'll probably be better as well soon! I wish you luck and good nights!

Alex

While I'm sure it feels like a lifetime to you and your husband, if his takedown was 6-28, he's still very early in the adaptation process. Have you asked the drs about immodium and metamucil? Also, try thickening foods (pasta, peanut butter, rice, applesauce, bananas, etc...)

Most drs tell patients to expect the first month to be filled with lots of frequency. Perhaps your husband's dr didn't prepare you two well enough for this reality. The state of things now is not necessarily an indication of the state of things that will be so try not to get discouraged (either of you!).

If things are really bad, call the dr, but be cautious if they suggest antibiotics (assuming pouchitis). It may just be too early to know if this is pouchitis or just the adjustment period. If they think pouchitis, ask for a scope. I was put on antibiotics 3 weeks after my takedown but didn't have a scope. I think this was a big mistake because we never really knew if pouchitis was the cause of the initial problems.

Lisa,

Tell him to hang in there. What he is experiencing is VERY discouraging but not abnormal. You should read some of my posts post-TD (last Oct and early Nov). I felt the same way and had very similar problems. Nighttime was the absolute worst. I didn't really sleep until about 4 am - when I could get 2-3 hours straight.

I did sleep better sitting up for some reason.

This nighttime problem lasted a month or two and did get better over time. I'm not sure immodium, fiber, or thickening foods really helped much at all early on. I reverted to a liquid diet to make things easier on my insides that were healing up. That usually did help.

And yes, I was walking around saying, "Take me back to Egypt" (a reference to the Israelites unhappiness wandering through the desert and wanting to go back to slavery in Egypt; slavery in Egypt = the bag).

Tell your husband I wish I had something better to tell him - but that the real answer seems to be time. I know in the midst of what he's going through that's not much of an answer.

Is your husband taking fiber? I had non stop problems until I started using Konsyl Fiber suppliments (This brand works really well). I mix it with Whey Fit Protein power (from GNC) and make shake using cold water (choc or vanilla) and it calms everything down and slows the process so I can sleep. Hope this might help.

Hi LisaH:

I was the exact same way, I couldn't sleep or do anything without going to the bathroom. I was going at least 25 times a day, had nasty butt burn, was extremely weak from not sleeping, didnt want to eat much, because eating started another trip to the bathroom. Eventually it started to slow down. I am almost 5 months TD, and it much better now, except I am experiencing pouchitis, which does increase my going to the bathroom. My good days now is about 8 -10 a day, but I still have days of going at least 15.

It will get better, I was so frustrated at first, but the doctor said it was normal.

Be patient it will get better.

Good luck.

Sincerely,

Craig

Don't get discouraged!! The first few weeks are really hard. I had the tendency to go a lot more at night than during the day as well. It will take a few weeks and then it should calm down. For the meantime, sleep as much as possible during the day to get needed rest. I was very discouraged too, but in a few weeks, it got so much better. Good luck, and this should pass just like the other less-than-enjoyable phases.

Thank you so much for the feedback. I really appreciate your time to answer us. Yesterday was absolutely horrid for Shawn. The cramps/spasms were knee-dropping. He did sleep in the chair last night, and did do a bit better than in the bed, but he's still feeling miserable. I am printing your words of encouragement for him to read, and we see doctor tomorrow. It can only get better from here

Thanks again, Lisa

I hope your Dr. appt. went well today. I remember back in '04 when I had my reconnect, for the first few months I thought I made the biggest mistake of my life, I was miserable! I felt worse than when I had colitis! Pain, burning, no sleep, constant bowel movements. Most of the time as soon as I laid down from a toilet trip I'd have to get right back up again, over and over and... My butt felt like it was going to kill me! I was angry, depressed, feeling sorry for myself, I couldn't imagine this was right and that anybody else had these problems. I was at the end of my rope! (and my brother is a surgeon, I can call him anytime for anything or question) My brother kept saying hang in there, it'll get better, give it at least a year. WHAT! A YEAR! I'll be dead in a year from lack of sleep! But it did get BETTER! I still go to the bathroom alot, but I can go when I want to and I feel GREAT. It was worth it and I would do it again. If your husband is like I was, he will feel much better as time goes by. Steve

I know the general consensus is not to eat just before bed, but I have found that eating a banana at bedtime does wonders for me, much more so than Immodium. Couldn't hurt to give it a try.

I found it was easier to sleep sitting in my big comfy chair. sitting up seemed to help. I am embarressed to say I even spent a few nights dozing on and off on the toilet.
Also, the less I stood up, the less I had to go. If I ate something, I had to go almost immediately.
I'm not going to say don't be discouraged because people kept saying that to me and I just wanted to yell at them that I had no choice, going to the bathroom 24/7 is VERY discouraging! Duh! (It's hard to be mad and stomp around and throw things when your stuck on the toilet)
So, Go right ahead and be discouraged but.. don't take it to heart.
Even I'M getting better and I had complication after complication. Watch what you eat, try the fiber. Imodium gave me more diarrhea, ask the doctor about a Limotil script, it worked better for me. Maybe try and find something to do to keep your mind off the problem. Sometimes I was able to go less because I wasn't concentrating on pooing, I was concentrating on keeping my guy alive and shooting the aliens on Halo.
Hope the doctor can help you out. Good Luck!

Sarah