BURNING SKIN AROUND KOCH POUCH STOMA

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teena1
Posts: 9
Joined: 2011-10-09 21:59:37

BURNING SKIN AROUND KOCH POUCH STOMA

Post by teena1 »

I have had a Koch Pouch since 1980 with a few problems that I have dealt with--bleeding caused by an infection a couple of times. But the latest has been going on for some time now. The liquid and mucous coming out of the stoma often burns the skin around my stoma, making it very uncomfortable. I have used diaper rash cream, anti-itch cream, Eurcerin and other things but nothing seems to help much. I have seen doctors about this but they aren't much help. Is it stomach acid coming out or bile or what? Can anyone help me?
Flemmart
Posts: 119
Joined: 2008-04-30 19:34:07

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by Flemmart »

Hi...looks like we got our KP about the same time! I also get very angry skin around the stoma. Some foods really push out more acidic mucous so when I can figure out which ones are doing it, I avoid those and eat only at times...also, digestive enzymes capsules may help...

The only cream that works and heals it for me is SECURA Extra Protective Cream, 3.25 oz it has 30% zinc. I have to change my stoma cover every hour or so when its really inflammed until it heals.

You may also try Calendula-Cream (rub it on first) or vasoline (Aquaphor is best) followed by the Secura EPC.....

I hope this helps...feel free to pm me or let me know if I can help further. Janice
Ileo 1979 Kock pouch 1980
teena1
Posts: 9
Joined: 2011-10-09 21:59:37

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by teena1 »

Thank you so much. May I ask if you have ever had trouble with blood in the stool. I have iron poor anemia because of it and guess its because of the infections I get and have such a tough time getting a doctor to help me.
Flemmart
Posts: 119
Joined: 2008-04-30 19:34:07

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by Flemmart »

Hi...no, I only get blood when I over interbate or insert cath repetively to remove food chucks from cath holes.

But, my iron is also low now (I'm 53 post menopause) and have to supplement. It's common as we age to be iron anemic, then add not having a colon. Do you get monthly B12 shots? I give them myself - my Internist writes a script for it with the syringe and it's easy to do cuz it's muscular. I ask cuz without B12 it's hard to absorb iron - we need both.

For me, my life changed after getting an Internist as my Primary Care Physician. They are good at all things related to the body's system.

I can tell when my iron is low because my restless legs syndrome is really hightened. Dr will run the blood and it is generally near the very low end or low.

Not sure of the type of infections you get or why a dr won't help you?
Ileo 1979 Kock pouch 1980
teena1
Posts: 9
Joined: 2011-10-09 21:59:37

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by teena1 »

I was prescribed iron pills and take a liquid B complex that includes B12. We live in a small town now and the doctors in the area have never even heard of a koch pouch, let alone know how to treat any problems. After a couple of bad tries, did find a gastroenterologist that has helped me the most---looked inside the pouch for the source of blood, found inflammation and prescribed antibotics. I am 65 and after all these years, the past few have seen these problems arise. My blood levels always seem to be low these days--have even had a couple of iron transfusions. But even this new doctor could not help me with this burning skin or even the pain inside the skin which seems to be the areas around the pouch rather than inside it.

It is so nice to find someone with a condition similar to mine that I can correspond with. I just found this site recently and just wish I had found it sooner. Never joined the Ostomy Assn, but always thought I should. Thank you so much
Flemmart
Posts: 119
Joined: 2008-04-30 19:34:07

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by Flemmart »

it's tough...even in a big city I never found a dr that understood until I found my Gastro and Internist...and a surgeon who was trained by my surgeon but stopped doing kps.

regarding the b12, it's not absorbed orally. You should get a sublingual form (under the tongue) sold at healthfood stores and online or the injections. At least ask for the b12 level to be done so you know for sure.

I'm 53 and so happy to find fellow kpers. Also, there is another site wwwl.jpouch.org that has a special section KKorner with alot of information.

Ostomies require special care regardless of type...it's so nervewracking getting dr's to understand!
Ileo 1979 Kock pouch 1980
teena1
Posts: 9
Joined: 2011-10-09 21:59:37

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by teena1 »

I do take the b12 under the tongue and my gastro dr did check my level and it was okay. Thank you for the info to get to another site that would be helpful.

Have you gained weight since having your kpouch? I stayed about the same weight for many years but as I get older it is getting harder to to keep the extra pounds at bay. I need to lose at least 15 lbs. and am having a hard time doing it. I'm wondering if this extra weight might be contributing to the problems I'm having with the pouch.
bcirray
Posts: 76
Joined: 2009-07-13 18:04:05

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by bcirray »

I have the BCIR,close relative of the Koch pouch. As with other pouchers,I have irratation around the stoma from time to time. Here is my answer. I inquired while on a visit to a dermatologist what I might use for this irritation. He told me to use a liguid named Lidex (generic = Fluocinonide) Topical Solution. It comes in a 60ml dropper bottle. The Dr. said to place several drops on a cotton ball and pad the affected area with the cotton ball. I will do this procedure once and within two days the area will heal. The Dr. advised not to use it on a daily basis, only as needed (prn). It will sting when applied. You will need a script from the Dr. for this medicine.
As to web sites that pouchers can visit and gain knowledge, go to http://www.bcir.com , once there, create an ID and ask questions or peruse the Q & A board at the site.

Hope this helps

Ray (vp Qla)
Flemmart
Posts: 119
Joined: 2008-04-30 19:34:07

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by Flemmart »

I've gained 70lbs (I'm 5'8") since I was 22 and got my KP. I was so thin and it just packed on over the years. I am so ashamed as I should take better care of my kp. Now after menopause, it's brutal to come off. I am not having any probs thank god. I lost 40 lbs a few yrs back and gained it back. I have other health issues so exercise is difficult. The surgeon told me if you gain the weight slowly it usually is not effected. I am committed to loose at least 20lbs.
Ileo 1979 Kock pouch 1980
teena1
Posts: 9
Joined: 2011-10-09 21:59:37

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by teena1 »

Thank you guys for the replies. Just want to add that the irritation around the stoma is not only from the mucous burning but for awhile now a lot of clear liquid that burns is also coming through, causing me to change the pad often at times. Do you guys ever get any little sharp jabs of pain under the skin in different areas around the stoma? I even get sharp pain down around where I'm guessing the groin would be sometimes.
Flemmart
Posts: 119
Joined: 2008-04-30 19:34:07

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by Flemmart »

I have always have alot of mucous and change my pads often for years. The only time it's dry is if I'm dehydrated or taking something that causes dryness. I don't get any sharp pains around stoma - do you think you have a small absess or something? I had alot of pain in groin that no one could explain. It resolved after I had my uterus out for whatever reason. I was post menopause but my pelvic area was always sore and my fibroids did not dissolve on there own.
Ileo 1979 Kock pouch 1980
teena1
Posts: 9
Joined: 2011-10-09 21:59:37

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by teena1 »

So you had fibroid tumors in your uterus? I don't think thats my problem, but the pain in the groin area sounds like me, but it is stabbing like pains. Would a hernia do that? I have always drank grape juice 3 or 4 times a day with every meal. Wouldn''t go without it. Keeps everything fluid even when I don't drink enough water.
Flemmart
Posts: 119
Joined: 2008-04-30 19:34:07

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by Flemmart »

Hi...my pain was stabbing and I couldn't cross my legs without help lifting them up. No one had an explanation. You should see colorectal surgeon...he could diagnose if you have anything going on. You don't need a kp surgeon to run tests and see if anything has changed over the years. Then, if something shows up...you could be referred to a KP surgeon.
Ileo 1979 Kock pouch 1980
teena1
Posts: 9
Joined: 2011-10-09 21:59:37

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by teena1 »

Hi---I had my surgery done in Omaha, NE by Dr. Jon Thompson. He came from Mayo Clinic and I have the utmost respect for him. From there we moved to New Mexico and then to the Ozarks. He always calls me back when I panic and need someone to talk to when I have a problem. Was getting ready to call him about this skin problem when I happened upon this site and you have been so helpful. Do you know much about BCIR and how similar it is to kp, and if it is something we might want to consider if our conditions go south? It seems Dr. Thompson said he does other procedures more than the kp these days.
bcirray
Posts: 76
Joined: 2009-07-13 18:04:05

Re: BURNING SKIN AROUND KOCH POUCH STOMA

Post by bcirray »

teena;

Please go to bcir.com for an answer to your question of how the BCIR is constructed. Mostly from what I know, the two constructions are very similar nowadays. Since there are only two hospitals that do the BCIR and their DRs. were students of DR. Barnett (originator of the BCIR), all BCIR's are the same in construction. There are many DRs. that do the Koch surgery therefore it is quite possible that each may vary from the other. The one thing that is constant is the success rate (extremely high).

Ray
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