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12 replies

Help? Bulk but less control?

knitwittyknitwittyMember
I apologize in advance for any lack of preferable coherence in this; the isolation from all of this has finally got me into a depression and I have about a month to go until my psychiatrist has an opening to do something about it, so my thoughts have been difficult to put together.

That said, tomorrow will be ten days since takedown. At first everything was super liquidy - I mean like water liquidy - and there was of course a lot of burning and irritation despite my bland diet. BUT! I could feel it inside the J-Pouch; I had an awareness of it holding waste and needing to be emptied despite having some issues with controlling that process.

I have since tried several things to add bulk, as I consistently hear that bulk inherently adds control. I'd like to say a thank you right now to advice I got from a user of this site for Metamucil wafers - they are a godsend. So I've done pretty well at adding bulk to it.

With this added bulk, burning is very rare and probably only because of how raw I have gotten from all the liquidy waste at first. So that's nice.

The problem: I now have no awareness of anything being in the pouch. The bulk is still somewhat new so I'm hoping this will resolve itself with time, but I still feel skeptical as it seems if bulk inherently adds control than why is mine now worse? My awareness of the pouch's need to be emptied now comes when it starts to empty itself. In my pants. Obviously this is not ideal. At the moment I am free to sit on a commode all day to cope with this, but night's are big trouble if I try to sleep anywhere but a on the toilet. As the bouts are all relatively small and frequent this doesn't help matters.

Any advice or ideas as to why I can no longer feel the fullness of my pouch now that I have bulk? This is of course preferable to the amount of burning I had when it was all liquidy, but still far from ideal. Any info would be much appreciated, and I thank all of you who have gotten to the end of this for bearing with me in what I feel has been a difficult articulation.
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DH Donna HMember
Allison,
Don't worry! You are still a newbie and your pouch still hasn't figured its new role out yet. I had the same concerns as you did and was going crazy because I could not feel anything and my pouch was emptying....in my panties. It is very depressing but please realize that this is going to get better with time. You will be housebound for awhile but just know that you will improve immensely with time. You may even take a step or two backwards but be assured that your well-working pouch is just around the corner. Ask your doctor if he would recommend either Immodium or Lomotil to help you out for the next couple of weeks. Remember that most J-Pouch surgeries are successful ones so try and relax and go with the flow Smilerfor the time being.
knitwittyknitwittyMember
Thank you SO much for the feedback! I have a follow up with my family doctor next Thursday, so I will ask her about getting on Lomotil to see if that will help. I am already taking Immodium every day but see no evidence it is doing anything at all to help, and two packs of the Metamucil wafers each day. I had my surgery done at Cleveland Clinic and they gave me a skin protective paste barrier (that I have dubbed 'magic paste' since I started using it, as it is so helpful for the burning). Hopefully getting on Lomotil will make my nights a bit easier, and allow me more time in my actual bed to sleep. Again, it's great to know that this is normal even though it seems so counter-intuitive, and that it should resolve with time. Smiler
DH Donna HMember
Allison,
I had a thought regarding the Metamucil. 1. Are you drinking water with the Metamucil and 2. maybe 4 wafers a day is too much. I know for myself this would be excessive for my pouch to handle. The intake of liquid with the wafers should be minimal since it could give you the opposite of the desired effect. I'm wondering if the doctor instructed you to take that many.

I am sure you know that diet can have a huge effect on pouch function. Too much sugar, raw fruits and vegetables, spicy foods, gassy foods, etc, can sure play havoc with your pouch. You will be able to add more foods as time goes on but in the beginning, be careful.
These early days are very difficult but be aware that we all went through this.

Donna
knitwittyknitwittyMember
Any less than two packs of Metamucil wafers a day (today will be day three of using these) results in liquid fire instead of poo. My dad (who also had UC and has a K-Pouch (so doesn't need to worry about bulk)) suggested I try three packs yesterday to hopefully help with the burning.

Yesterday I didn't eat the two packets right away when I woke up, I put it off thinking maybe a little more liquidy wouldn't burn and I'd be able to control that (didn't work, but wowzah did it burn).

When I did eat the two packets it was still mixed with water-like poo, which feels like molten lava to me, so I ate one more packet before bed, and it has since gotten closer to the lack of burning I felt yesterday.

That miracle paste I mentioned, well, I ran through it pretty quick, luckily I came home from the hospital with two of them, one partially used at the time. I've been having to ration how much of it I can use until more arrives (which should be today (Mon) in the afternoon). So I've been doing whatever I can to at least take the burning away or lessen it in the meantime.

And no I'm not really drinking water with the wafers when I eat them, but some Gatorade yes. That's pretty much all I drink now is Gatorade, some water and decaf green tea.

Could you please explain further as to what you mean for it being excessive for a pouch to handle; in what way would it cause problems? I have so far not noticed any, unless you count not being able to feel when it needs to be emptied - however this is the only thing that has worked for adding bulk at all so far.

My surgeon did not instruct any set amount of anything to take for bulk; he just said to try things like Immodium, Lomotil, Metamucil, and the Metamucil wafers and figure out what works for me, as people seem to respond to these things differently.
P PluotMember
Gatorade has a TON of sugar, I wouldn't be surprised if that is what is making your output so liquidy and hard to bulk. Please try replacing it with a real rehydration solution. You can make your own according to this recipe from Cleveland Clinic:

Mix 1 liter (4 cups) of water + 2/3
tsp of table salt + 2 tbsp of sugar + sugar-free Kool-Aid or Crystal Light (to taste) in a
pitcher. Sip between meals.

Hope this helps
Scott FScott FMember
Allison-
The early days can sure be difficult. I don't agree with Donna's advice to limit your water intake with the Metamucil, but only you can tell how things seem to be working when you try them a few times. I find that the Metamucil works best for me with a meal (I take it right before). I have misgivings about that much Gatorade - you might try skipping it entirely for a day (water instead) to make sure it's not causing trouble. Some zinc oxide cream is an inexpensive barrier cream for the butt that you can easily get in whatever quantity you need - it's not as fancy as the others, but it works fine for many folks (certainly better than rationing). I find Lomotil at bedtime to be helpful.

Are you doing kegels? They also may help.
DH Donna HMember
Allison,

What I meant about excessiveness is the amount of Metamucil I take. I could never take a whole wafer at one time. It causes a lot of gas in me and I would be on the toilet constantly. I just break off a chunk of the wafer and that is enough to absorb the acids and puts enough bulk in me to do the job. I eat it with my meal and it does the trick for me. Our pouches react so differently from one another and what works for one may not work for another. What's consistent with j-pouches is the inconsistencies from one person to another.

I do agree with Scott regarding the skin barrier. I am a daily user of Zinc oxide (Target Brand-it's cheap too)and I always have Calmoseptine on hand. When your bum is on fire, there is nothing better than Calmoseptine. It not only feels good, it's a great healer. You may also want to try Ilex which is a very good skin barrier.

And I second the motion about Gatorade. Too much sugar is an enemy for most pouches and when you're a newbie like you, it can really cause problems.

Again, hang in there and just realize that it's a rocky road in the early stages but time will definately heal.

Donna
knitwittyknitwittyMember
I was using Calmoseptine at first at the hospital but it isn't a good enough barrier for me for how acidic my output was. I had been using it in between surgeries as well because I had a major drainage problem with the mucus, lots of it that I couldn't control and I found that to cause but burn alone so I was already on to that and prepared for it. However after takedown the burning increased as waste mixed with the mucus.

As for the Gatorade stuff, I've heard that brought up again and again throughout my whole battle with UC, and when I eliminated it before or even reduced it I became very dehydrated despite water (dehydration put me in the hospital several times before my surgery), and it made no difference whatsoever to the liquidity of the content then. So I am very skeptical that it would make any positive difference now, rather than just dehydrating me. (Keeping hydrated is something I have struggled with for years even before my UC.) And when I was in the hospital for my surgery I wasn't drinking Gatorade at all. Just water, and when I reintroduced it to my diet it made no noticeable impact whatsoever on my output, so again, I doubt removing it again would show different results.

This has seemed to be, to me and my doc, one of those things that is true for most people with UC but not me. Like how I didn't have a single food trigger before surgery but most people seemed to have something. (Eventually dairy was out due to all the damage from the disease, but even so.)

I am doing kegels, and have been for months.

Thanks again for all of the feedback and advice, I'm looking forward to getting to my new normal; whenever that may be. Smiler
vanessavyvanessavyMember
There are natural ways to make vitamin water to hydrate. I infused herbs and fruits in my water and did just fine.

Are you actually dehydrated or just feel like it. Way to tell is by color of your urine. There area days I feel dehydrated by drinking only water but my urine is clear so I know I am not. If it is a concentrated yellow then that is signs you are dehydrated.

Gatorade is pretty bad for you so I would try to do natural hydration water at home and see if that helps. There are a lot of recipes out there as well if you google 'natural hydration drinks or naturdal electrolyte drinks recipes".

Sugar will make pouchitis worse as well as gas, small bowel bacteria infection, etc.
P PolypsAplentyMember
My frequency/control issues really didn't kick in until about a week after the take down. I wouldn't worry too much, I was definitely having plenty of accidents two weeks out (one particularly bad one in the car while driving hahaha), and at about 4-6 weeks after takedown, things got a lot better. Things will get better soon!

As for metamucil, if you have a surgical RN, I'd ask what specific dosage and how much water they recommend. My doctors at Mayo have a specific recipe for me to follow (1 tbsp in four oz. water twice a day and no water for one hour after), and it's not the recipe on the box (it's less water.) I know everyone's got a different method and some people even cook the flavorless metamucil in their food, but the amount of water you have in it probably makes a difference in terms of stool consistency and effect. If you've got a surgical RN, they probably have pretty specific advice on when/how/what dose to take metamucil or immodium -- mine definitely did and it was a life saver! I asked my surgeon, but the surgical RN was really the person to talk to for those sorts of things. Bless those RNs!

Also, I take one crushed immodium pill right before bed with about a tablespoon of applesauce and that seems to work well for the night time. Apparently crushing it makes it work quicker. Works for me! Good luck!
G grandmaof1Member
I only drink smart water or there are a few others that have electrolytes in there water and are cheaper. I know Target has there own brand. I know it is not much but that is all I drink and I don't drink anything else. I am sure it is better then nothing at all. Maybe that would be a good start.

Hang in there. I feel your pain and your depression. I am a little over a year out and I am not sure if I like my pouch or not. I love being skinny again. Since I can hardly eat anything anymore. But I have also been depressed about the whole damn situation. I had no choice but to have my whole colon removed because of pre cancer cells. We are all in this together. So I love this site and it does give me hope. And I know I am not alone.
knitwittyknitwittyMember
I tried reducing the amount of my Gatorade and it has impacted the acidity of my output noticeably (by lessening said acidity), but has made no impact on the liquidity of it. So for the sake of lessening the bum burn I am trying to drink as little of it as possible, at least for now, but I am getting pretty dehydrated without it.

vanessavy: I am definitely dehydrated.

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