Frustrated and Scared

Marybeth, sounds just like what Jeffrey went through, only he was not going that frequently.  He would go days and not eat to get it to stop.  Had lots of accidents at night, did better doing the day.  He kept losing weight.  I'm wondering if the gluetin free may be part of the problem.  I think we were told to eat bananas, potatoes, rice, toast.  I think apples and applesauce cause diarehia.  Rather than talk to the surgeon, who, as far as he is concered, his job is done, talk to your gastro person.  Sometimes they have better ideas.  But keep in mind, this is a brand new pouch and is just learning to function.  It does take time, but I do understand how exhausting and frustrating this is.  Jeffrey had is pouch 4 months before they put him on IV nutrition and took him off all food and everyday was a struggle.  Good thing he doesn't work or go to school, it would have been impossible.  I do hope it gets better quickly.

 

 Hang in there! It seems that this surgery should make us better but the aftermath of dealing with a new pouch is TOUGH! Everyone's pouch reacts differently to things.  Probiotics increased my stool output and odor. Even six years later, I need to be careful with how much yogurt I eat because it makes my pouch a bit irritable. this seems to be the exact opposite of most people with pouches. you are still in the early stages of this, hopefully, her pouch will settle down and things will get better soon. Some jpouchers are fortunate and things slow down in just a few weeks, but it may take much longer. Mine took a couple of months, but  then it got sooo much better. Hang in there; it does get better! 

How careful is your daughter being about what she eats?  I know it's hard but the key is to find what works for her and stick with that regimen for awhile before adding any new foods.  Then.......add one at a time and just a small amount to see how it works.  If it doesn't work.....don't eat it for awhile.  Start with a very, very simple diet and eat the same foods (if they work) everyday for awhile.  Nine days is really early.  I stuck with a very simple diet for six weeks.  It worked for me.  White noodles with cheese, bagels, plain peanut butter,skinless chicken breast, water, weak tea, white bread, well cooked carrots, pretzels, jello (sugarless).  That was about it!  Six weeks!!!!!

Thank you all.  She is sticking with a pretty basic diet so I´m not sure it´s that.  But I will continue to be extra careful with her foods. I have been doing some reading and see is in the 9% of people who have higher that 13 x day output. Very frustrating.

 

I also read that excess vitamin D can cause diarrhea and she´s on a super high dose which I´m going to talk to her dr about.

 

Thanks again for the encouragement.

Marybeth, 

First off, I am so sorry that she is suffering so much. Second off, what works for the goose does not always work for the gander.

When I had my k pouch done over 35yrs ago my surgeon had me on no carbs, no diary, for the first 30 days. 

I had very tasty broths, fish, eggs, chicken and ground beef. A little apple sauce and jello.

This was his version of a low residue diet. Granted the specificity of the k pouch is to avoid fiber and thickening agents but it was a very low gas, low urgency diet. 

Every time that I go off of this diet I tend to build gas, have problems with urgency and bloating. I know that for the j pouch you don't worry about fiber but it is the frequency and urgency that gets you.

If all else fails you may wish to try it...

Hope that she does better soon.

Sharon

hi mary was wondering how it going with your daughter its been rough for me started metamucil yesterday and taking more imodium also sun 25m yesterday 15 so we will see what happens god luck jj

I know its frustrating when people tell you shes still in the early stages but unfortunately to get to that better ground its something that just has to run its course. i know mine didnt settle for probably around 2 week mark some people take a bit longer from what i have read. something concerning that i saw above was  "Rather than talk to the surgeon, who, as far as he is concerned, his job is done" maybe its like that for alot of people and mine does gastrology on the side but since my surgery in 2013 i had issues here and there and shes always been the one to see me. being that shes the one who does performs these surgeries i would think the surgeon has more experience in pouches then a gastro doctor. 

Sorry your so frustrated, and I feel for your daughter.  I have a son that is in the process getting ready for round 2 in a couple of weeks.  Stressful for sure.  When I had mine done the surgeon told me to not get excited about anything for a year.  Good or bad.  Your small bowel is not designed to be a large bowel and it takes a while to figure that out.  I think mine took about 4 or 5 months before it calmed down some.  Just one of those things.  I kept focusing on the long term that over time it would be better than before.  Good luck I hope it gets better for her.

Hi Marybeth

 

By the sound of it,Imodium isn't working. She shouldn't be going 20 times a day. She needs to be prescribed something that will actually work. Something that she can take first thing in the morning, then evenly thoughout the day before meals

 

These medications reduce stools by decreasing bowel activity. Examples of these medications include:

1. Imodium (non-prescription);
2. Lomotil (prescription); or
3. Tylenol #3 (prescription)

Sounds like she hasn't benefited from the food that she's eaten, missed out on vital vitamins and minerals as nothing is being absorbed.

 

 

 

 

 

I'd advise against Tylenol #3 for this purpose. Tylenol #3 is just a mixture of Tylenol/acetaminophen and codeine The acetaminophen isn't necessary, and just creates an overdose hazard. If codeine is what's needed, codeine is what should be used, IMO. 

Sorry you are having problems.
It's a tough period because you don't see improvement.
But it will come.  It comes at a very slow pace.
A hardly noticeable pace.  I am 17 months out and I was where she was.  I never though I would get better.  But I did ever so slowly.  We just have to have patience.  I was told by the surgeon it will take 18 months for your body to adjust.  And it does.  Me... I think it will take longer to get the bugs worked out.  I still have a few problems.  But everyone is different as said a million times here.  We all recover at different rates.  Patience is the key no matter how bad it seems.  It gets better.  I am proof of that.  9 days out.... For me.... I couldn't even dress myself and never thought I would be at the point I am at now.
Good luck to you and all the best.
Richard.

Thank you everyone, your comments are always helpful and I´ve asked the Drs about your suggestions!

 

Lily is STILL going around 20 times a day and this is exactly two weeks today. I think the surgeons are as frustrated as we are. They put her on Flaygl two days ago which hasn´t helped. I asked them to switch her from Imodium to Lomitil and she took her first dose this morning. Praying that works.  It just seems at 2 weeks out there should be SOME improvement??

 

dgtracy, thanks, I am trying to be patient. At this point I hope that´s all it will take, time. If she has to wait months before she gets better, thats ok just as long as she does! 

She still has urgency but is getting better as far as leaking so that´s good. The surgeon said it´s also good that she doesn´t have high volume each time she goes.

 

Has ANYONE had this experience and it got better??  It seems like she is in a very low percentile from what I read and it´s pretty scary.

 

 

Thanks again and best of health to you all!

I went through the same thing.  Two weeks is not very long.
This is a very serious operation.  It takes a long time for your body and yourself to figure it out.  Lomotal helped me.  I don't even use it now.  I use nothing to thicken or slow it down.  I just watch what I eat.  Have patience.  It may take months.
I know that not what you want to hear.  Sorry. I don't suggest drugs to other j pouchers... Not my place to do so.   Why is she taking an antibiotic?  Does she have an infection?  If not that throws things out of whack... It did with me.  It does not discriminate against good and bad bacteria.
Richard.

Richard,  thanks for the reply. I´m not quite sure why the antibiotc, they said it´s too early for pouchitis and too early for a scope to make sure. They did say it would thicken things up and slow her down which hasn´t yet. They also said it could be bacteria overgrowth, which isn´t that pouchitis?  I guess I gave in because she is going so much and nothing else is helping. I am not a fan of antibiotics at all. One Naturopathic Dr I took my daughter to believes that UC is caused by an imbalance in the gut which antibiotics really affects among other things. Tomorrow I´m taking her to a medical dr who uses more natural treatments and one of his specialties is IBD. I´ll see what he has to say about the Flagyl, I´m sure nothing good.  I´m hoping he can help with the food thing because I feel like that has a lot to do with this whole thing.  I started her on the VSL a week ago and it gave her terrible diarrhea. I hope she will be able to go back on probiotics because I hear it helps to prevent pouchitis. 

 

She started Lomitil this morning, so far no difference. Does it take awhile to kick in?

 

It´s good to hear that others have had the same issue and are better now, it gives me hope. So sad to see my girl like this. I know she´ll get there.  Thanks for the encouraging words!

I hope the lomotal helps.  I had such a long recovery because of a few complications.  So the length of mine was extended quite a bit.
I am not sure how long it takes for lomotal to kick in.  Seems like it didn't take too long back when I needed it and it was very effective when I used it.  I had to stop using it because it was constipating me.  I used an antibiotic once and I  did firm things up but it was only short term.  A weeks worth.  They thought I had or may have had pouchitis but I didn't.  I do hope she gets better and you can get some good advice from your Dr.
I tried probiotics but didn't see or have any change with my output.  Keep us updated and I know it must be difficult to watch and pretty well go thru this with her.  I cannot imagine doing that with one of my kids.  Bad enough doing this at a late stage in life.  But to start out so young.  I do hope she gets better soon.  Have patience... I know it's hard.  I feel for you.
Richard.
P. S.  I was having urges constantly a few months back.  And I do mean constantly... I would go and very little would come out each time.  I was having them day and night nonstop.
Now this may have nothing to do with what is going on but someone here suggested an antispasmodic.  I tried that and it stopped.  Right away.  And a day like today.... I worked 8 hours and did not empty until I left work.  Now it's not like this every day... I wish it were but the antispasmodic  might be a topic to bring up.  If she is having the urge to go all the time it may help.
I don't know but I thought I would mention that.

Mary Beth, I, too, am sorry for what your daughter, and you are going through. It took me months to get my # of movements down below 20 though I was happy they were all controllable and I had no leaking. I did switch also to Lomotil rather than  Immodium as it has done narcotic in it and thus should be a stronger med to slow things, and thus reduce trips to bathroom.  I take 2 before each meal and at bedtime- total 8, but can't remember how long beside I noticed it helping.  I also took an antispasmodic called Hyoscycamine which dId help by reducing the feeling/urge that I had to go all the time.  It is taken sublingually, under tongue. Now I use a big spoonful of creamy peanut butter when I need to slow things, like before I go out to dinner. I still rely on lots of carbs. I do believe it is early in process for her and that a low fiber diet will be in order for awhile. 

 

 

Has she seen her surgeon since coming home? I know in my case they had to digitally stretch the anastomosis which while not fun, allowed me to have larger stool output and it did decrease the frequency. Regarding nightime leakage, it is common as the muscles relax when you fall asleep, but I find that setting an alarm for 3-4 hours helped. Easier to get up and empty to avoid leakage than have mess to clean up. She is young so I expect this would be temporary for her. 

 

With 20 BMs daily is she struggling with butt burn? You didn't mention it so that would be great if not an issue. For many of us that was the worst part of high frequency. If she does get burning from acidy output, I recommend using lots of Vaseline to clean well, and 

Ilex paste is a special order that really protects skin down there. Wish I had started using it earlier! 

 

Good luck! I truly wish her a speedy recovery as well as patience, a positive attitude, and lots of support to get through this major change in her young life!

Laurie

oops... Was going to say that a couple months out from takedown when I was experiencing high frequency and some bleeding, my doctor put me on Flagyl prior to a scope with the idea that if the antibiotic improved things, that I probably had pouchitis. It did not imorove my condition so it was determined I did not have pouchitis, which was confirmed couple weeks later with scope. Maybe your doctor is also using it to fix pouchitis in case she has it. If not changing condition, maybe not pouchitis. Just a thought, my experience.

laurie

Thanks for the replies. 

Liz, she has seen the surgeon and I was hoping he would have done an exam. I asked him about "stretching" but he said it was too soon which I didn't completely understand. He was not my daughter's surgeon but his partner and he kind of blew off our concerns and told us just to be patient. Seems like an exam would have been a good idea to me. Instead he wrote a script for Flagyl which now I kind of regret putting her on.  I don't like the "just in case" idea of antibiotics.  They also started her on the Lomotil 2 days later.  She went 17 times yesterday which is a slight decrease (teens are better than twenties!) and now I'm wondering if it's the Lomotil or Flagyl.  Probably did one at a time.  I worry about antibiotics so early on if it's not necessary because what happens if down the road she really needs it, do you become resistant to it?

 

She does have butt burn sometimes and when she does its horrible!  She has 3 types of cream and ProctoFoam (steroid). These seem to help but I just jotted down your recommendation. Thanks!

Thanks again EVERYONE, you have all been so helpful, I really don't know what I'd do without the support and suggestions I get here. 

 

Thanks Richard and Liz,  I will mention the antispasmodic to her doctor.

 

Torg, good luck with your son, I'll be thinking of you both. Keep me posted.

I understand your frustration! The first couple weeks post take down I had 20+ bowel movements a day, leakage, terrible butt burn, and felt absolutely horrible.  None of the medications worked for me; it really just takes time for the body to adapt.  Everyone is different but I found for me it was really more important for me to eat frequent small meals versus withholding food as this made my output very runny. This is still the case now. Also when you get into 20+ bowel movements even the creams begin to become irritating. a warm water rinse from a squirt bottle can do wonders.