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J
Hi,

This is my first post but I've been on this site a bit since I had the second surgery of a two step J Pouch on Feb 26 this year.

I was diagnosed with UC in July 2012 and from then until my first surgery the only medications that provided relief were prednisone and Remicade. They never put me into remission but I was able to live a fairly normal life when taking prednisone.

Deciding that I wanted a life independent of strong medications and free from worrying about when the next flare would hit, I chose to have a two step J Pouch surgery at UCLA (I've received great care from my GIs and surgeon at UCLA).

I had the first step done on Jan 10 2014 and recovered quickly. I found the bag pretty easy to deal with other than some skin reaction to the adhesive and the obvious body image issues that come with the bag - I dealt with this by knowing the bag was temporary. It was nice to call the shots as to when and where I used the bathroom.

However things have not been as rosy since the second surgery. The surgery and hospital stay were uneventful other than my ostomy wound getting infected and opening itself but I'm dealing with that and it's healing quickly.

My issues is that I'm going to the bathroom 15 to 20 times through the day and night. The output consistency has been a hard mud (very rarely liquid) but since I started taking one Imodium in the morning and night along with half a Metamucil wafer with each meal the output is pretty much formed, not as big or long as when I had a colon but similar in shape to a slug or worm.

I don't really have a question but am more looking for some friendly reassurance from people further than 18 days past takedown.

Will bathroom trips start to reduce over the coming weeks as the pouch stretches and is more easily emptied at once? I'm currently having 'clusters' of movements when I can't get a decent amount out of the pouch.

I had a stricture but it has stayed open after three dilations and my surgeon says the pouch and cuff are healthy with no signs of pouchitis or cuffitis. He's not sure what is causing the frequent bathroom trips but says to be patient.

So, is what I'm experiencing 'normal' or potentially a sign that my j pouch may not be a success?

Thanks
James

Replies sorted oldest to newest

suebearsuebearMember
You are WAY early in recovery!!

Expect improvement in months, not days for the first year. It will get better but it will take time. I had the same problems with lomotil/imodium and stopped using it. For me dealing with the frequency was easier than dealing with feeling backed up. You might want to keep a food diary to see what foods are causing higher frequency. Sugar makes things looser so if you want to continue with imodium, perhaps drink juice too.

Patience will be your best friend. Dr. Sak has a great jpoucher meeting every three months; you might want to consider attending the next one and meet some who have traveled this path before you.

Sue Big Grin
suebear
TE MarieTE MarieMember
I agree with what Suebear says and just want to add that if your consistency was more watery that you might be able to empty better the first time. I'm not advocating runny poo but less formed stools are easier to pass for me and I would guess they would be for you too as you have already had to be dilated. Maybe cut back on your Imodium or metamucil as you go. My surgeon and I were constantly changing the amount of metamucil and imodium I took the early weeks after my surgery.
TE Marie
J JamesforpmMember
Thanks for the information. I'll be patient.

Am I correct in saying that Imodium helps to slow the bowel so could be helpful during the night to reduce frequency while sleeping but Metamucil helps to 'bind' that movements therefore making them thicker?

FYI when on Metamucil and Imodium, I don't feel constipated or backed up but instead have trouble emptying the pouch in one sitting.
J
C CeeeeCeeeeMember
My take on not being able to empty "the first time" reminds me of the role gravity plays in our new plumbing's functioning. Expelling effluent...as well as possible...then, standing up for a few minutes (or even walking around for awhile) may help the effluent to move on down so it, too, is in position to leave our body. If the effluent is thick this may not work as easily. I prefer my effluent rather liquidy in order to enable it to pass easily and completely out of my body. If I want it a little thicker....a bowl of oatmeal does the trick! If I want to help things along....an apple helps immensely. Best wishes in finding out what works for you. All of this takes time and trial and error. Even though we may all have a J-pouch, what works for one person may or may not work for another.
C
P PluotMember
Yup, still so early, you have a ton of healing and adapting left to do. I'll echo that although it's possible for me to have formed stools with my j-pouch, it is not what I prefer -- it's easier for me to empty completely when it's softer/thinner.

Definitely stay on the toilet for 5-10 minutes, and try rocking back and forth, leaning forward and backward, stand up and sit back down, and (my personal favorite, which I still do ~8 months out) stand up and touch your toes -- no matter how empty I feel, I almost always am able to empty more by doing any of the above. This should improve the "clustering" situation.
P
J JamesforpmMember
Thanks all.

My problem definitely seems to be producing stool that is too thick to easily pass regardless of food intake or Imodium. Any ideas?

@plout - when you touch your toes, do you stay in that position for a while or just a few seconds?

@markgregory - I've been using water enemas to good effect. Do you hold the water in for a while or expel it straight away?
J
P PluotMember
Not, not for long. Maybe five seconds and then I sit back down. Usually that dislodges a gas bubble and that forces out any remaining stool from the pouch.

There are ways to loosen your stool. Try drinking more fluids, especially with meals, and try drinking hot fluids like tea or soup. Eventually fruits and vegetables will loosen your output as well, but it's a little too soon post-op to add fiber yet.
P
J JamesforpmMember
Plout, are you suggesting that I shouldn't be eating any fruits or vegetables at this time or that I shouldn't eat uncooked fruits and vegetables? I've been following the diet instructions at j-pouch.org/diet but my reading of those instructions is to avoid uncooked.

By the way, I like your blog. Did you get rid of the c diff (I had c diff before surgery and managed to kill it with two weeks of antibiotics)? Are you back to living life?
J
P PluotMember
Yep sorry -- everyone's a bit different, at 18 days post-op I was only eating small amounts of cooked veggies. I meant that increasing the quantity and eventually adding raw can loosen your stool. The guideline I followed was not to add raw veggies or anything high in fiber (e.g. cooked corn) until six weeks after surgery.

Thanks! Yes I think I've kicked the C. diff, knock wood. Somehow I actually stayed pretty active and didn't miss out on too much while I was suffering, but doing much better now and finally starting to exercise again after a winter of non-stop coughs and colds. I should update soon Smiler
P

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