Skip to main content

I had my takedown January 2013. I have always experienced the usual butt burn, but my new Gastric Dr. has me off Immodium. Now, everyday, for 15-20 hrs, I'm in burning Hell...NOTHING helps relief the burn, I stand in the shower, and can barely run the water down my rear end. I'm screaming in pain and crying. NO preparation soothes..they all burn (Calmaseptine, Proctozone-HC,Lidocaine, Dexamethesone, vaseline, diaper creams,...) 

Everytime I go to the bathroom (atleast 15 times a day), I dread it, because it's TORTURE! Like someone is rubbing salt in a wound. I've had a sigmoidoscopy and was told a month ago my j pouch is fine, and there's nothing wrong inside. I realize things could've changed in a month, but I'm in such excruciatin pain.  Any ideas why I'm suffering?or what to do? I'm barely eating, since eating makes me have to go to the bathroom. I've tried blending my foods and am eating clear soup with soft dinner roll. It feels like acid comes out when I go to the bathroom, and that's what's burning me.. PLEASE, ANY SUGGESTIONS...

Replies sorted oldest to newest

I forgot to mention that I don't eat any spicy foods, fried foods, raw veggies or fruits except once in a while seedless watermelon and seedless cuccumbers.  I've been reduced to a screaming, crying 61 yr old, due to the severity of the burn. (Even sitting in a sitz bath kills, and I can't use baby wipes or even the thinnest piece of tissue when I wipe...OUCH!!goes on for HOURS:  go to bathroom and can barely walk to the sink to walk. Then, hop into shower and barely can allow water to dribble down rear since even water burns, then I towel off, and attempt to apply one of many creams(even tried coconut oil), and everything BURNS. I can't take much more of this. HELP!

 

G
My daughter had a bout of bad diaper rash as a baby. I had leftover Lansinoh cream (what you stick on sore breasts when nursing). It is lanolin, so make sure you don't have a sensitivity, but it cleared her issues up toot sweet. It makes a really good waterproof barrier.

I like A&D ointment best, but you've probably tried it.

I've never had such intense issues as you're experiencing. I know some people speak of meds to adhere to bile acids that could help you and that you could ask about.
rachelraven

Thanks, Scott.  I've tried EVERY brand of zinc oxide on the market. Still burns. My Dr. says that because I've been taking up to 8 immodium (per my surgeon) every day for 2 yrs, that I have Narcotic Bowel Syndrome. I asked if Immodium was a narcotic. He said that if you were to "melt" enough of them, you'd get a "heroin"-like substance. He wanted me off of it, says it part of the reason for the burn. However, I've been completely off of it for a week(had been weaning down) and I've never had the burn for so many agonizing, tortuous hours at a time, everyday!..Used to only get once in a while. Maybe the immodium was camouflaging it, but I'm almost ready at this point, to take it again if this keeps up.

G

Thanks, Rachel

Yes, I've tried A&D and it BURNS! As I mentioned, even water burns! Somehow, I have to figure out what's causing the burn (bile, acids?) and how to eat foods or take something to curtail them. It's like rubbing salt in a wound, or dripping acid down my rear end...it's  affecting the quality of my life. Have been in wracking pain, and haven't left the house this week especially. In the past, I'd maybe have a day here and there of burning hell, but now it's been every day for the past week! 

G

It's true that Imodium and Lomotil both have a mecanism of action similar to opiates, though almost entirely on the gut. Lomotil is a controlled substance, though at the lowest level ("Schedule"). I don't think any dose of Imodium would affect thinking or blunt pain.

 

Maybe your doc would support you trying Questran, to absorb the bile salts. I don't know if it would help, but it probably wouldn't hurt. Good luck!

Scott F

In this situation I've found a bath better than a shower, hot as u can stand it. Afterward, blow things dry with your blow dryer on low heat, then use salve of choice.  Wipes are a dicey proposition for me, sometimes they make things worse if u I get the wrong kind.  And no Imodium?  i might be getting a second opinion on that one.  Good luck and feel better soon. 

MO

Because imodium has no effect on the brain, it is not addictive like heroin. However,.  Imodium does have an effect on the digestive tract.  It slows down the time it takes food to travel down the digestive tract.  When you stop taking imodium suddenly, digestion will speed up causing but burn.  That is why your but is burning.  You came off the imodium to quickly.  From eight pills to no pills is a too rapid change.  Your body must gtet use to the reduction in imodium. Have you thought of taking baths instead of chowers.  I take baths to sooth my but.  I often sit in the tubs for half an hour.  It's the only thing that sooths my but.  Afterwards I use a zinc oxide..  

J

HI All,

I couldn't take it anymore...I went to my surgeon, and after internal examination, she's put me on Lomatil (2tablets,4x day), since I stopped the Imodium as per my gastrerenterologist. She said that I don't have an abcess, fissure or stricture; my j pouch looks fine. She recommended taking the Cholestyramine powder 3x day (Questran) to help firm the stool. My gastric Dr recommended a CT  scan, but she doesn't feel I need one. The only weird thing is that she and her assistant said I DO NOT HAVE Hemmorhoids, yet, not only can I feel one or two external ones, but they burn and itch. Why have 3 Gastric Drs  told me I have a few "whoppers".Is the  surgeon and her assistant blind?? She said that in order to stop the burn, I MUST stop the frequency of going to the bathroom.(I still burned, but not like this, even when I was on the Imodium..you can read back in April, I wrote into this forum about being in excruciating pain...BUTT (pun intended)...

 It's like a miracle...I'M PAIN FREE for the past 24 hours!! After suffering with this intense excruciating anal burn for 2 weeks, I'm terrific!! (so it shows me it's not any abscess, or fistula, etc). Im still reluctant to eat much; just my "safe" foods of Chicken, dinner roll, applesauce. Nothing raw. Will see what the next few days bring...I'm floating on a cloud!. Incidentally, I took Rachel's advice and tried A and D ointment, and so far, it's the ONLY thing that doesn't burn!!! YAAAAAAAYYYYY

G

Add Reply

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