Skip to main content

I seem to have an issue with the crack of my a$$! I had a proctocolectomy so it is a "barbie butt". Yesterday I noticed part of the raised flesh has an irritated part that hurts. I feel like I have a hemorrhoid external but that can't be possible?! I always have real bad pressure down there so not sure what is up. Anyone relate? Advice? Either it goes away or see a surgeon? I am just so done with doctors, I swear every week I am at an ER or doctor. (not all pouch/fap related). Last ER visit I went in for dropping a 15 pound weight on my foot that busted my toe. not my week...

I should have known when the vein my my hand blew out Thurs before my scope I was doomed lol

Since I have FAP and a bad upper scope recently I am doctor out!
Original Post

Replies sorted oldest to newest

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.
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.... Big Grin
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.
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 Smiler
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.
Last edited by vanessavy
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
Last edited by skn69
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.
Vanessa,
Give it time, the valve thing that you talk about is mostly gas in the pouch pushing up against the valve...it happens to me all of the time...makes me feel as it my valve wants to push itself out of my pouch...it is just difficult to evacuate the gas sometimes depending on where it is situated in the pouch...try massaging it a bit...heating pads help too...I am not usually a big fan of anti gas drugs but baking soda does help things and so does green tea...I tend to believe that you are suffering from anti-biotic bacterial overgrowth or yeast overgrowth which would explain a lot of what is going on...use cranberries if you can for the urinary part and it may just help the pouch too...
Some people suggest antidepresants for your miserable pouch...(pouches get depressed too!)...you may want to try that and see if it helps.
Just keep asking questions...it is a long and complicated journey but it is worth it in the longrun.
Sharon
I'm not sure if continent pouchers can get Irritable Pouch Syndrome but if so, the treatment is usually antidepressants (as Sharon mentioned).

It must be nice to only intubate 2 or 3 times a day but maybe you could intubate more regularly for a bit and see if that helps to alleviate your symptoms.

I also agree with Sharon about the antibiotics - if you're taking them and they're not doing anything then you should probably stop. You wouldn't want to develop a resistance to them just in case you need them for something seriously wrong.

kathy Big Grin
What did your surgeon say? You raved about their after surgical care, so I assume they are on top of this too? Yes, I agree with Sharon, it can take up to a year or more to fully heal. I ate a very very basic diet for the 1st year. If I introduced anything to gassy or fiber etc it was too painful. Then, year 2 I added more foods very slowly. Even smoothies caused me problems sometimes. I think too much sugar. I also did not have any lactose. Cooked cheeses seemed ok once in a while.

Did you have the camera endoscopy? You'll have to have the camera pulled out the pouch via a scope since it is too big for the cath holes. But, it's a great indicator of the complete digestive track.

Have you tried to hitch yourself up to the constant cath for a few days. For some reason, sometimes a body will simply reject the way the poo flows even though the inside of pouch is fine. It may give you some relief occasionally.

Also, because the bladder sits very close to the pouch, sometimes all the pressure gets the nerve endings/muscles/whatever (especially after numerous surgeries) and normal gas pain becomes excruiting. bladder is constantly irritated by my pouch so I pee alot and/or leak. Add to that the uterus. It was very difficult for me all those years - I finally got my uterus out at 54 and only because post menopause I was having lining thickening issues. I wish they would have taken it out sooner. Lot of less groin pain. I feel the outside of pouch is sensitive (I too have no pouchitis or any internal pouch issues.)
To me, it sounds like one of those "rock and a hard place" scenarios. Antibiotics help your IC symptoms, but may be counterproductive for your BCIR. One thinG seems certain, though. You can't expect to compare an ileal pouch function to colon function. In some ways, us folks with UC/Crohn's are at an advantage, because our bowel function was lousy before surgery. So, usually, even though not perfect, life after colectomy is not a huge life changer, except for better health. At least we are not filling the toilet with blood multiple times a day!

And yes, gastritis CAN cause tremendous amounts of gas. And yes, undigested carbs are a major source of gas. You'd think bread and potatoes are the common sense thing to eat (AKA, comfort food), but not necessarily.

Add adhesions to the mess, and that equals pain. I hope you get it sorted out.

Jan Smiler
My surgeon is always available. I spoke to him Sunday. I talk to someone there at least weekly they like you to check in weekly anyway.


I had a camera done back in October, not recently.

Sharon I wish I could eat cranberries. I miss dried ones but people with IC can't eat them, they are our enemy.

I was put in Cymbalta and I had every allergic reaction listed and ended up in the ER. I might go on Celebrex and I hear that an help pain. Today is ok so far.. I ate some VSL this morning and got my hair done. I had some horrible gas from it so might try a different probiotic like Align.
If you think you may have IBS/IPS, Cymbalta is not a treatment for it. The antidepressants prescribed for IBS are in the tricyclic class, like Elavil, but not in the dose used for depression. It is a lower dose. It does not actually change your gut, but your brain's awareness of what goes on in there. So, it's possible a tricyclic would help your symptoms.

Align may be a good choice for you, as it has been studied for IBS. It can take months for it to be fully effective though.

Jan Smiler
I know Elavil all too well. It is used to treat IC. I can't take that either. I never got diagnosed with IBS, I had symptoms until most of my stomach was removed then that stopped. I also think it was FAP the whole time and nobody diagnosed me with it since I never had a scope.

Align is way cheaper. It is 23 dollars at CVS right now vs 80 a month on VSL.
I had an upper scope but no lower. My upper was fine back then. Sad, if they did a colonoscopy back then I might have had more options. Like the IRA I was planning on having. Medical community makes me sad at times.

I will try align. Just have to make sure the capsule dissolves. I test capsules all out in apple cider vinegar. Little trick the BCIR nurse told me about. I am always nervous they won't dissolve and get totally blocked.
I had the BCIR created in October last year; converted from a failed J-pouch. Of course, I also had the proctectomy at the same time, and have had issues similar to yours. I had a lot of ranging pain/pressure in that area, which I felt as though I needed to go to the bathroom (which is impossible down there now). After a few weeks of increasing pressure, a sudden Burst of fluids released. It turns out it was an abscess (perianal). This keeps happening in cycles (every few weeks it will build up again and break through the skin). I had a traditional incision and drainage (which really sucked, as it takes a long time to heal, is painful, and needs a nurse to pack and repack the wound every day). The other option is through an interventional radiologist, who can use CT guided imagery to locate and drain the abscess through a needle (local anesthetic of course). I've had both options, and am now under the care of the colo rectal surgeon to manage any repeat occurrences. Unfortunately, my only relief throuout the day has been Vicodin. I don't like the side effects of it, but it's better than suffering in pain all day.
Hi Adam,
I haven't seen you on the board yet, so welcome if you are new to us.
A lot of people who have proctectomies have similar problems...some people find that if they have recurring abscesses then a sort of permanent drain can be helpful (your surgeon or G.I. has to agree)...but it is a possbile solution...I think that most of us have a degree of pain and pressure on and off once the colon/rectum are remove and things are closed off, my French surgeon likens it to 'phantom pains' similar to those that amputees suffer when having lost a limb. Some surgeons even suggest low-grade anti-depressants to dope the brain to stop thinking that the limb is still there...
It has been 33 yrs for me and I still 'feel it' constantly (especially when I am sitting too long on a hard surface, riding a bike or wearing very tight jeans) and dream of 'normal rectal functions' at night...when I have overdone it at the gym or on the bike I know that the zone swells, launches sharp pains and probabley collects a bit of fluid that reabsorbs on its own.
No surgery is perfect, especially our kind and the numbers of unsung complications are high...this is just one of many...
The valve pain is both common and not normal...As Jan says, your intestines do not 'feel' pain...they are not built that way but they do feel cramping and gas that reports the pain elsewhere...your brain does not understand your new plumbing...it does not resemble anything that it has been programmed to deal with and you will need a long time to 'rewire' the mental circuts so that it understands what it is feeling and how to differntiate between normal function and abnormal pain.
Traveling gas can get caught behind the pouch or between the valve and the pouch wall and make you feel very uncomfortable...But it is normal. The valve dries out and needs lube for smooth insertion and occasionnally it can 'hit a wall' but if you leak anything, have constant pain, sudden shooting pain or sudden bleeding (not just a bit of red or a couple of drops) then you should put a call into your doctor.
It is a long road but it is so very worth it in the end.
Sharon
Sorry to hear Adam! I hope it gets better for you. My pain down there sort of is gone, well the one I was having that was different than the normal sensation I have had since surgery.

Who did your BCIR? Since you are in Vegas I thought maybe you went to California?

I have been living with chronic bladder pain for awhile now so I guess I am just used to always being in pain. I usually do not take anything for pain like Oxy or Norco unless I really need it and I always wait until it is unbearable then maybe I use 2mg a week. I cut the pills down a lot.

My goal is to be off all pills besides my Ativan I take. Bentyl is by far the one thing I can't let go of. My intestines move a lot and it calms them down. I can't function without it and usually antibiotics but I am determined to make probiotcs work. Usually day 3 of being off antibiotics I am pretty bad and I am on day 2 and already feel I need something.
Carrot & apple juice....I forgot...the 2 things that I have found that are astringent enough to 'dry out' a wet gut (read: high motility, over liquidy stool etc)...also, and you may find this useful if you are trying to taper off of all unnatural products, Active Carbon....you can make it yourself by burning a piece of toast but you can find it in pill form at your local health food store...it is another 'grandma's remedies' or in this case, grandpa...in the war when everyone was suffering from disentary (sp?) the only thing that they had was active carbon and it did the trick...my dad used to burn toast for me when I was in the throws of a really bad gastro...and it worked...
Sharon
Adam.. I don't have a kpouch but had the jpouch removed and "barbie butt" just 3months ago. This pressure and pain you describe was happening to me last week and then like you said it all burst out with fluid everywhere, guess it was an abscess. So Vanessa.. should you have that checked out too as mine was started with what seemed like a blister.

I saw the doc yesterday and was told this could just keep happening. I had abscesses while hospitalized and had one drained in another surgery and another drained through interventional radiology CT. But three months later? Wasn't ready to deal with this. Now they probably want to do EUA next week to figure out what else is going on. And like what is happening to you, they said this could just keep going on.. for a very long time. Adam, did they give you any idea if and when and how this all stops?
Just checking into the thread since it went OT for a bit but I am doing really good for the past 2 days. I wasn't 3 days prior, went off the antibiotics and switched to probiotics. My pouch was bad and I had the usual glass shards pain shooting up my rib cage and pouch and everything was just pure clear liquid coming out of me. So went on cipro and few hours later I was good. I am now on a sublingual previcid for my severe inflamation in my esophugus and gastritis. My gas is still there but on cipro yesterday and so far today I am feeling pretty awesome and no clear liquids. I even ran (now can since the gallbladder is out) and danced, painted, cooked.

So for now I am a slave to the antibiotic. I can't go through how I feel off it right now. Maybe eventually I can get off them. I will give the Align a try once it is here.

Otherwise I had my biopsy report. Most of my polyps were the well known adenomas that us FAPulous people get. The 10mm large one removed from the Duodenum (sp) was some big name polyp, I just can't remember the name, and it had severe dysplasia (ongoing trend with me) so I am under steady surveillance since I am not a candidate for the whipple surgery at this time since my stomach being partially removed would be very risky. So far it isn't a death sentence yet so just going to live life for now.

I am very unhappy where I live here in Dallas. Been miserable for a year I have lived here so life is too short to live somewhere you hate so I am looking to move back to the East Coast. VA/DC area perhaps and go from there. I think that has helped my mood and pouch, hope I might just get out of here. So many bad memories here and it is UGLY!

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×