can someone give me suggestions to help with ileostomy reversal problems ( extreme anus irritation)

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leahbea
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/1/2009 10:45 AM (GMT -6)   
hi! im new here
im 16 years old and was diagnosed with ulcerative colitis 6 years ago. AFter many years of fighting with steriods, remicade and every kind of treatment my body started to shut donw. In febuary they rushed me in for a sub total colectomy with an ileostoy. i woke up colitis free. in april of the same year they removed my rectum and in july of 08 they reversed my ileostomy. I am in no pain in my stomach however and having a horrible time going to the bathroom. the doctors said because i dont have a colon i cant absorb the acids and thats why it burns so bad to go to the bathrrom. I have extremly senstive skin and my anuss is complety burnt and irritated with what the doctor said was a fungus. she put me on an antibiotic which helped but for only about a week. she said it was no safe to perscribe again. people have suggested every from calmoseptine ointment to monistat. nothing has helped and the stoma nurse said sometimes people choose to have their ostomies put on because of this reason. but not me- i had too many irritations and rashes with it. does anyone have any suggestions as to what could halp with the burning/fungus? im miserabale..
thankyou

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/3/2009 12:28 PM (GMT -6)   
leahbea--welcome to the forum! Have you tried to adjust your diet? Do you keep a food diary? Usually the foods you eat can make an already bad situation worse. Start off with bland foods and add from there...if something bothers you, note it, and try it again in a few weeks.

Is the doctor who gave the antibiotics your surgeon/GI? If it was your family doc, get in touch with your specialists or even your stoma nurse...

Keep us posted on your progress...

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 2/3/2009 3:15 PM (GMT -6)   
Some people have had good luck with taking Questran. It's an RX and I think it's for acid reflux. Apparantly it binds the acids and makes them less troubling. You can also try eating metamucil wafers before your meals (not the powder). It also binds food and abosrbs the nasty burning properties. The good news is that this should be a temporary condition and will get better over time. Visit www.j-pouch.org for more suggestions.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


leahbea
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/3/2009 6:12 PM (GMT -6)   
thankyou both for the ideas! wo responded earlier today but im not sure it went through so here i go again
i am starting to see a nutrionist and have eliminated my thing out of my diet so far including spicy foods. i tried bland food, and even just liquids and nothing helps enough. my gastro doctor and then my surgeon both put me on an anti- fungus medicine that worked amazing. unfortuanlty they only percribed five pills and are scared to try it again because they dont think its good for stomach. my stoma nurse told me to use monastate and calomseption and keep the oitment on to protect me all day whcih has helped a little. it is not as bad when i got to the abthrrom but if i dont have the cream on for even one minute the burning in horrible. i also have elimanated bathes which i lov because they promote fungus. My stoma nurse said alot of patients who have thier ileostomys reversed go back and have them put back on because the burning never goes away. but for me that wont be the case im willing to fight through the pain. Im going to talk to my mom and the doctor about the pill you told me about and also start taking metamucil pills( i only ever took the powder) thank you all so much

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/3/2009 11:06 PM (GMT -6)   
Could it be a yeast infection? When they say fungus it's all I can come up with, but antibiotics would only add to it. There is a prescription cream called Nystatin which will clear it up almost immediately. I've also used Nupercainal which has a numbing agent, it's over the counter at any drugstore. If you are not completely dry when you put on Calmoseptine, you can create a yeast infection because the cream actually holds in the moisture.

I would also suggest trying foods to bulk you up (brat diet) which would lessen the bathroom trips and help the irritation.

I hope you find relief soon
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 2/4/2009 12:13 PM (GMT -6)   
Baths saved my life in the early adjustment days; have your tried bathing and then using a hair dryer to dry the anal area well?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


leahbea
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/4/2009 8:18 PM (GMT -6)   
sue- baths have saved me to. unfortunatly the doctor said thats how fungus grows and has asked me to stop taking them.
Theresa- my mom and i spoke to my doctor who is ordering the powder nyostatin for us becuase ive been using so much cream that im never dry we have set an appt with a nutrionist in hopes of adjusting my diet

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/8/2009 10:44 PM (GMT -6)   
Hope you can get this under control soon and start feeling better. Keep us posted as to how you are doing
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 2/11/2009 1:26 AM (GMT -6)   
Have you tried taking a bath then using the hair dryer to make sure that is all the way dry?
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/11/2009 1:55 AM (GMT -6)   

My Dear Lea

Please do not worry at all for this irritation. It is quite common after  J pouch. Since you have been shorn off your colon, the bile juices / enzymes hit the J pouch straightaway and cause irritation. Some of the foods also cause irritation, like citrus juices, corns, apple juice. I am sure you surgeon and ET must have given you a list of those foods. I faced this problem for quite some time and even as of day have this problem in case I take some rough food. Please avoid excess salt or spicy food. That does cause irritation. I have tried all ointments in moderation and most of them would be of help only for some months. Finally I found metronidazole (Metrogyle Gel plain) which is very helpful. Always apply it on your anal canal with your finger. Apply it around the anal region too. This would prevent irritation. Please wipe your bum dry after going to loo and apply this cream. This would be very helpful. In any case I also tried a natural herb (Neem leaves). THese leaves were boiled in water and thereafter the water was used on the affected region. Please do not use soap in that area as it would cause more irritation. The things would be fine and you don't have to go that far as making a judgment of having the pouch removed. Infact at times I used to howl with irritation, but now the things are fine with this cream. You can also use some cold cream (Charmis) used to work for me. You may try some creams which are used for piles, which do have a peppermint and give a cold icy feeling and much relief. If you become sick and patient, one thing one should not loose is patience. So have patience, the things would improve. Give time to your small intestine and J pouch to adjust. Your body would adapt this soon. After a point of time, the small intestine would take on the function of large intestine and start absorbing excess water so you would not have watery stools.

Any more questions feel free to ask. Good luck to you.


45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 2/12/2009 10:26 AM (GMT -6)   
Leah =) I'm 17 and had my ileostomy surgery in Nov. 08. I'm HOPING to get my reversal in the next couple months..I've tried bribing my surgeon with pies and cookies and cakes to do my reversal HAHA ..doesn't work. She likes me ALOT though =p I'm so sorry that your having that much pain! It must suck..My surgeon gave me this cream called Magic Buttpaste..Thats really the name of it. It WORKS! It must like, numb your anus or something because it helps so much..for me anyway. Everyone's different. But I'd ask your surgeon about it. Ask if she can prescribe it for you because you can't get it OTC. Have you tried taking a bath and then rinsing off REALLY good everywhere with a showerhead? My mom LOVES bathes and she said thats what she does. That might be okay? I'm super excited to find someone close to my age =) Do you have AIM or ever get on HW chat?
I really hope you find something that works for you! I think anal pain is worse than the pain I had in my stomach when I had UC. When I woke up from my surgery I was still connected to my anus, she just made a j-pouch and gave me an ileo to let my insides heal. And when I pooped out of my butt It HURT because I was going so much and wiping so much. Have you tried to wipe with something other than toilet paper? Like, unscented baby wipes or something like that? that might help too =)
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008..waiting on Step2 =]
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"

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