butt issue

Vanessa,
Have you been wear thong unddies??? Tight jeans? Anything that may be irritating you??? Try a salt bath a couple times a day, loose unddies and skirts for a while...it can be due to physical irritation of the area which causes inflamation of the zone (face it, God did not intend for that area to be closed off!)...if that doesn't work try a cortisone based ointment like hyracourt. Ice packs can help too.
Sharon

No I don't ever wear thongs and tight pants aren't really for me since getting this pouch, if I have a bloated gut I need some breathing room.

I am not sure about your area but mine is raised like having a puffy "outie". now the area that is puffy has a section that feels extra puffy or dangly like the size of a peanut. I always have pressure down there like I have to go the normal way. I am assuming that is gas but not sure, just what it feels like. The peanut thing has more pain and irritation.

Someone on the no colon FB page told me to put peanut butter down there :-) I have no idea about the truth in that it starves the oxygen to the veins but.. it is good for some jokes.

...maybe peanut butter and jelly. lol

Sitz bath comes to mind and sounds soothing. But I was of course told to use creamy peanut butter first! Who knows! I am down for anything these days if it works lol but the jokes didn't stop. I was alone cracking myself up for a change. My 2 day pity party of large polyps removed Thurs finally ended

It sounds like it may be an abscess. I think you should have it checked out just to make sure. If it is an abscess you probably don't want to leave it go too long.

kathy

I am going in this week most likely since now my valve is messing up. Starting to think I have scar tissue blocking it since my tube gets stuck on something in there.

Recently I too have had increasing pressure in that area. Sitz baths do seem to help and least during and for about 2 hours after. But I was just thinking yesterday I should maybe go see my doc as I did have big ole abscess post surgery which was less than 3 months ago and don't know if they can return or not.

I've had the pressure down there for 30+yrs...part of the normal 'phantom pains' that amputees get when they have lost limbs...I can occasionnaly feel as if I need to push something out but there is no way that anything is coming out of there....
Yes, Vanessa, I know what you mean by something hanging sort of...kind of like a second, smaller labia...it is scar tissue...you can have it surgically removed in a while for esthetic reasons but that bit of tissue/skin can get easily irritated...you are in Fla aren't you? Heat and sweat can irritate it too...so keep yourself airy and cool down there by using only cotton unddies...Never heard of the peanut butter down there but I am openminded to anything that works.
I agree that it could be an abscess in there, they are common enough after having yourself sealed shut...but if there is just pressure, no PAIN and no fever I would try the other solutions first.
WHAT is wrong with your valve???? What are you hooking on????? It can be a staple or the edge of the valve so be very careful and turn the tube when inserting or removing it.
Sharon

IT is better today so maybe it was irritated. It really reminds me how a hemorrhoid feels. Right now it just itches bad no pain anymore, that is how it was with my crazy amount of hemorrhoids.

I don't know what is up with this damn valve. If I keep a catheter in it for a day or 2 it is ok but this is the 2nd time in 2 weeks it has blocked me going in easily. Took awhile yesterday and felt like I was hitting a wall. Other day I pulled my catheter out and some of my stoma I swear was coming out with it. I just had a scope and nothing looked wrong with it, they said everything looked good so I would have to do another scope to see what is going on but just tired, would be my 3rd scope in 3 weeks.

Bad enough I might be facing a stupid Whipple surgery. ugh I am over this disease it is screwing my vacation to Portland.

Vanessa,
use hydrocourt on the itchy bits, it works well but you can even try calomine lotion (sp?), it should calm it down nicely.
Yes, you may be hooking on something inside of your stoma and 'pulling it out'...and that can be very dangerous!!!! Keep your tube in for a week and see if it helps...if you hate the bag then bend the tube and clamp it down or plug it but leave it in....if you are hitting a wall then you are taking a wrong turn sometwhere...go slow...But I strongly suggest the indwelling tube for now...or use a stoma plug for the time being until it heals...something has come unhooked or twisted or unstapled. Mine was hooking and I ended up pulling out 3 staples...very close to catastrophic.
Go back onto full fluids for a while, blended stuff, soups and creamy desserts or tofu...avoid chunks of stuff or anything that would force you to pull and push your tube in and out.
Give it a chance to heal.
Sharon

I have tried to clamp but it is weird, if the tube is in my pouch gets mad if it can't drain. I get stool and gas right at the valve and it moves around with loud sound and it doesn't feel good. I personally think something is off with my valve, the thing always hurts if the tube isn't in there. I guess I need to bug people to do more to figure this thing out. The last time I went into the local kpouch surgeon he said it was twisted inside pretty good. The tube for a week straightened it out now same crap again but I can get it in. I wore it for 2 days so see how it is later on. Tomorrow I will have to call for an appointment.

I might just fly to see my BCIR surgeon or drive (if I feel like doing the 20 hr drive) and maybe he can do more for me.

I have had pressure off and on where the anus used to be for many years. It is worse when I wear something that can irritate that area. I have mentioned it to two doctors and they said not to worry as there is nothing left in there to go wrong. Not sure I love the advice.
Also, I am having work done in a couple of weeks for what we believe is adhesions that are blocking the tube from going in. I will let you know how it went and what the procedure was in a few weeks.

My French surgeon who will do anything but touch the pouch removed 3 adhesions around it during the galbladder surgery...they were holding the pouch in a strange position but now it is 'swinging free' which is even stranger...will see Dr C in Toronto in 2 weeks to see what he thinks.
Sharon

I was told adhesions could be it too. I have some horrible gas that hangs out right at the valve and intubating has been difficult and painful. I was told it should never hurt in the small intestine. hmmm

Anyway, my pouch scope was clean and the valve was fine so nobody thinks I have problems. I need to be my own doctor. I have a local kpouch surgeon I have been seeing since he is across the street from where I live pretty much but he isn't my original surgeon, also doesn't believe in pouchitis and the living collar.

'There are things that you believe and things that are true'...my favorite quote...Tell it to your k pouch doc across the street...he dosn't have to believe in living colars but the fact is that they exisit so he has to deal with it!
Valves can hurt, pain shouldn't be normal but being that yours is so young and new then it might not be totally abnormal...not being able to intubate is NOT normal though...try putting the tube in while laying down (in the tub is easiest if you have one)...I have never heard of adhesions IN the pouch/Valve, not sure if it is possible or not...the small bowel is a totally different tissue fiber than the abdominal cavity but I do not know if it grows adhesions (why not????)...anything is possible with us.
The best thing that your k pouch doc can do is a opacification...and this is the important part: have him drip/squirt only a couple of drops of opac at a time into the valve and film it until it is full...then he can push the tube in a squirt into the pouch...make sure that he takes pictures with you laying flat, on your right side, on your left side and STANDING UP.
It makes a very big difference....
They did not see my problem until Dr C told me to have the radiologist do it that way...low and behold we saw the part of the valve that had pulled out and the part that was being hit regularly by my tube and causing a dent in the valve wall...
You need an open minded and ingenous radiologist to get the right pictures.
Sharon

Intestinal pain- here is how it happens. While there are no pain receptors in the intestines (source of doctors telling you it should not hurt), there are stretch receptors. The stretch receptors are triggered when you have distension, typically due to gas. THAT is perceived as pain because it triggers spams and cramps. So, it all makes sense.

Adhesions outside of the intestines, in the abdominal cavity, can cause this because they prevent the normal movement, trapping the gas. These are the tight bands of scar tissue that can cause obstructions, or just crampy pain we get with gas collections.

The problem is that surgical intervention/manipulation causes the adhesions, and the treatment for adhesions is surgical release. So, they do not like to go in and release these adhesions unless it is a last resort due to intractable pain or obstructions, because of fear of causing more adhesions.

Good contrast imaging might help sort out obstructive/structural issues. If antibiotics do not resolve pouchitis symptoms, it likely is something else, particularly if the underlying diagnosis is FAP.

Jan

I guess I have to wait it out. Since the day I had surgery insane amount of gas has been my problem. More so than anyone else in the wing. I would just lay in the bed sobbing in extreme pain (on 2 pain killers, cipro and gasx) while doctors tried to figure out why I was in so much pain. I honestly felt like the pain management doctor thought I was a drug addict or something. I also had my gallbladder removed not sure if that would make a difference.

Anyway, I am 6 months post op as of yesterday and yes the pain is better but I am not that optimistic anymore that I will be even more better. I have pouchitis symptoms but the scope and biopsy showed no pouchitis, actually if I didn't know better I would think I was looking at a healthy colon in the images! My valve hugged the scope perfectly, etc. I then had a small bowel barium xray and the radiologist said my pouch looked good and I had BEAUTIFUL intestines. Ugh, want to trade doc?

The worst is the gas/pouchitis symptoms. I rotate antibiotics and I def can't go off them but I have no pouchitis. It is also I think a 2% chance someone with FAP even gets pouchitis so people were puzzled over the symptoms. My GI thought maybe I have overgrowth of bacteria and to switch to VSL. I tried the VSL and it worked good for about 2 weeks then I was bad again. My stool started to smell like diesel fuel was coming out of me. If I eat a salad I get the same smell.

My upper scope was not good on the other hand and I have bad esophigitis and gastritis and some polyps removed from the duodenum and Ampulla. I have FAP and Interstitial Cystits so the pouch causes my bladder to flip out and flare. Just a real nightmare lately. I hope n another 6 months things have changed. I guess similar to people who come on here and complain about the jpouch, I have my own issues and I feel very doom and gloom.

On the other hand I still think this surgery was the best option since I still only drain 3 times a day, 4 if the "pouchitis" symptoms are bad.

I am not sure if any of you have read this http://www.amazon.com/COLITIS-...ervoir/dp/1461114845 book? A man who has UC and the BCIR wrote it. It is hard for me to relate to someone with UC but I read it prior the continent ileo surgery to see if it was for me. He talks a lot about adhesions he has and pouchitis then started going to a Rolfer for Visceral Manipulation and that fixed all his problems so he swears by it. Of course Insurance doesn't cover it and you need a few sessions just like you would going for acupuncture, cupping, massages, etc. So I couldn't afford him just yet but now I am thinking I should try, maybe it will help.

Survival tip #7 talks about it on his site. BCIR Advocate

Sex usually hurts me, as if everything is sealed shut inside so I don't do it often. other day I was having an ok day so thought my poor husband might want some sex, bad enough he has been dealing with my IC issues for years now this. So not to get to graphic, the first minute I had all this loud gas and movement go into my pouch from my small intestine, I could feel it all move in a big wave with penetration and it hurt really bad then it was huge relief so maybe something needs to be "rolfed" out!

Other than that I am planning my 12 day vacation to Portland in August, screw it. I was in NYC 2 times, once at the 3 month post op date then again at the 4 month. I refuse to have this pouch control me.

Vanessa,
I am not sure but what you might be feeling is in the 'normal range' and that you may need time to allow your brain to adjust to the physical changes in your anatomy.
Gas? I think that I have a gas creating machine in my gut but by releasing it a bit more often (try emptying a couple extra times a day to remove all of that air)...I feel so much better.
If you are only emptying 3-4xs a day then it certainly isn't pouchitis in my experience (It could be an I do not want to belittle your concern)...but trapped gas and materials...you may just be allowing your pouch to overfill.
Always, Always empty that pouch pre-sex (there is no mood killer like huge gas bubbles rumbling around in there!) and use extra lube for the purpose of comfort.
I would also add that if the antibiotics are not helping that they may very well be hurting. They are stripping your poor pouch & guts of all of the natural, healthy bacteria that we need to help digest and thus causing more gas!
If at all possible, stop the anti biotics, go on a simple protien and soft veggied diet for a couple of days...Remove all carbs (flour products, rice, grains etc) and all milk products including yoghurt...give your pouch and body a break...Drink tons of tea but very little juice...you should feel an improvement in about 3-5 days.
Please try it and let me know.
Sharon

Thanks Sharon!

It helps to talk to other people with pouches. I thought about trying to find people in my area that have continent pouches. Few people on facebook talk to me a lot so it makes it seem normal. I can intubate now but sometimes the tube doesn't go in good and it feel like I am stabbing my bladder. Have to walk around then go again. I am thinking maybe gas creates bubbles it goes in and doesn't budge.

My gas issues are different than when I first started out. Before I didn't have movement it just had pockets that hurt, now the gas moves a lot by my valve, sort of thought it was all connected to not being able to intubate good and the gas there. Or my pouch is just bigger and the gas says "Hey that is how we get out lets stay here and wait for this tube thingy to go in." I usually have to rub my stoma area to move it away.

I guess this is why they thought I had pouchitis. I would empty more often because of the gas then literally 5 minutes later (not eating or drinking anything else) it was all back. So I thought something had to be wrong I had just irrigated for 15 minutes and bam all back. Bentyl helps when I use it for gas a lot but it makes me tired. On a good Bentyl day I have gone 15 hours without draining and didn't feel like I had to either. Felt like I didn't even have a pouch in there a few times when I as in NYC last so I thought maybe I was just getting better and this was my new "normal" life.

I have good days but not off antibiotics but lately my good days on antibiotcs are few and far between. I have been dying to get off them. I swore I was going to make the VSL work again and stick to eating a Paleo diet (meats, good fats, veggies, no grain, dairy, sugar, etc.) But it is a viscous cycle when depression kicks in, never want to eat healthy then.

Last night I cooked a week's worth of a pretty clean meal of coconut milk, chicken and sweet potatoes so see if the initial first dish causes not to much gas and from there.

Not sure if gastritis causes more gas. I have gastritis pretty bad right now, I can't feel it but the scope shows it all in my stomach. Wondering if long term use of antbiotics is causing it. Usually stress or surgery trauma is another thing that causes it.

As for the pain I get, the gas is one thing but the pain I have is like pins and needles are in my pouch and glass shards. Some days when I eat it feel like crushed glass is going through my small intestine, literally. I just want to die it gets so painful and depressing. My pouch get the pins and needle pain randomly. It was 100x worse in the beginning but now it comes in waves. I know if I get startled it is worse or any added stress. I need to learn to meditate. My one colorectal surgeon said I should smoke pot! Had to remind him it is not legal in this stupid state and he said "Who cares..." :-)

Only good thing about being on antibiotics is it keeps my IC flares away and those are horrible. On a bad IC day I can pee 20 times in an hour. Not little amounts either, gushing streams. I am considered an IC hopeless case and everyone wants to give me interstim but I don't want a device in me that will just cause more scar tissue. I am signed up to do stem cell treatment for it but not sure when.