just had reconnect, not going well :(

Hi Angela,

I had a really rough time too after my reversal surgery and felt much like you described. I would say it took about a month before the intense burning and itching died down. It was so bad sometimes and I felt helpless. I also used a sitz bath or often just took a regular bath and would sit in the water for an hour, as it was the only means of getting any relief.

It takes some time for your body to get used to its new design. The anal area is not used to having such frequent and watery stools, so it needs time to adapt to the new conditions. I also got fissures which were extremely painful and made me feel like I was passing shards of glass.

If there is ever a time when you're not feeling irritated (maybe when you first wake up), that is when you want to apply the Calmoseptine or other barrier ointment. If you wait to apply it until you've already gone to the bathroom, then it is too late and may even make matters worse.

I would recommend purchasing a bidet if you haven't already. I didn't want to spend several hundred dollars, so I purchased one called Blue Bidet BB-20 Portable Bidet. If you do a search for it, you'll see that it's very small and something you can just keep next to the toilet. I've been very pleased with it, and I think it only cost me about $20. Definitely worth the money because you do NOT want to use toilet paper all the time, as the excessive wiping will only add to your misery.

Feel free to ask more questions, and I'll do my best to answer them. Things will get better!

thank you for taking the time to respond and for the helpful information. I am really struggling here and I do have more questions! Not only is the burning, itching, irritation causing major frustration, but also i am up all night, every fifteen minutes or so running to the bathroom with the sense of urgency and then only going a tiny bit, maybe consistency of applesauce sometimes and then sometimes watery, then back to the couch so i don't keep my husband up, back to the bathroom in fifteen minutes, back to the couch, ALL night no kidding - i've now been up basically for 36 hours. it's as though my pouch has no capacity so every little bit that gets in there wants to come out, and now. Any thoughts on this? I can't imagine even one more day with this urgency - it is truly debilitating, I cannot go out of the house. I am trying to see light at the end of the tunnel but wondering if the jpouch was a mistake. I will take your advice and buy a bidet for sure.

Hi Angela. Whilst I have not yet had a J Pouch constructed nor connected, I still have a bag after 22 months, I now have to consider having a J Pouch or removing the possibility of ever having one. That is why I am constantly searching for information on the plus's and minus's. One thing that I believe is constant in all my research so far is that I can expect all your symptoms if I do not eat the correct foods, be regular with meals and maintain portion control. Sometimes a little psyllium is what I had to use before I had the Ilestomy and then needed it more than ever after to thicken the output. Personally I am struggling with the decision to have the J or not to have the J. I have another 2 weeks to make up my mind. I can say that the bidet is a must. Cheers and I hope it improves for you quickly.
John

Angela -- it's not too early to be having a bout of pouchitis and BMs every 15 minutes for hours is not typical adaptation, even this early. I would recommend contacting your surgeon.

In the meantime, absolutely only use water to clean yourself, pat don't wipe, and use barrier creams. The barrier creams DON'T actually soothe -- what you want to do is get yourself completely clean and dry, then apply the cream -- this will prevent the *next* BM from irritating your skin.

Are you passing gas with these bathroom trips or just stool? Very early on I found I had a lot of little gas bubbles and it could take a long time for them to work themselves out, but they caused a lot of urgency. So if I sat on the toilet for less than 10 minutes at a time, for example, I would definitely need to run back a few minutes after I left. You might want to try sitting for longer than you think you need to, as well as shifting around, changing positions, stand up and sit down, bend over and touch your toes, etc. This will help you empty out as much as possible with each trip and hopefully buy you more time between BMs.

ANgela,

I had the same response post take-down. I swore I was going to have the jpouch taken out immediately. It felt like I was passing molten lava, barbed wire, and broken glass.

For me, a bidet and Calmoseptine were a God-send. I used it immediately after washing and patting dry, I would apply itliberally inside and out, and it really helped soothe the itch and burn.

I also used prescription strength lidocaine 10%, but that stings like hell for a minute or two before it starts to numb things up. Once it does though, it is pretty good for a while. But let me tell you. The sting will make you crawl up a wall to try and escape, at first.

I won't go into my whole story, but the insane itching and burning do pass as your anus adjusts.

One last note: Don't under any circumstances use soap to wash your bum, except when you shower. Soap is an irritant and will make things much, much worse. Plain water. Plain water. Plain water.

Let me repeat.... plain water. No soap.

It seems everyone has very different experiences but a common theme is the frequent trips to bathroom/diarrhea and burning. How long will I have to deal with this? I gave myself some additional time to recover and scheduled to return to work Jan 2 / 2014. I am really hoping to have things aced in long before then but I would really like some feedback on what I can expect for the next couple of months? Thank you all for your replies, help, and encouragement. My family is getting worried as I am hitting rock bottom here!

Ask your doctor if it is pouchitis. I finally asked my doctor to do an exam (something he did not do in the first 3 months) and he diagnosed me with pouchitis. 7 day dose of Flagyl cleared me right up! Wish I had known / forced him to do an exam earlier.

You might try foods that could thicken your output. Peanut butter, bananas, oatmeal, etc. Stay away from foods that may cause gas. Avoid salads, carbonated drinks, etc.

Wishing you the best. It will get better.

Not everyone gets butt burn - I didn't, but I used a barrier cream religiously from day 1. Not everyone gets extreme frequency - I was advised to try to delay going to the bathroom a bit, to stretch the pouch in the beginning (within reason). That method helped me adapt to a very reasonably frequency over a number of weeks. As others have said, if you're extremely gassy it will be difficult to "hold it in."

Angela,

I had such bad diarrhea and butt burn for 3 month, non stop. I wanted to die, and like you, so frustrated and frightened. You are such a newbie and sometimes it takes a lot longer for some people to adapt. Have you talked to your doctor? I would think he could give you a prescription for Lomotil to slow things down. How about Pepto Bismol? That has saved my life many a time but go over this with your doctor of course. Metamucil is another idea so things can bulk up a bit. A bidet is a tremendous idea but a substitute is a perianal bottle. I use one and you just squirt your privates clean and then dab some tp for drying and then your ointments. Constant rubbing with tp will make you even rawer so this bottle has saved me big time. But please, know that your symptoms will lesson with time.

Angela,

I have had my jpouch for nearly a year and still he my ups we downs. Your body is relearning with new plumbing. I think it took me about a full month before I felt well enough to even consider being ok. I found trying to bulk w the BRAT diet Nd psyllium wafers were my best defense. It made a world of difference to be patient when emptying my pouch as well as getting a bidet, we opted for a coco bidet. I still use barrier creams to ensure no irritation as well. I think we all ask "what did I get into" in these first few weeks but I know once I turned that corner I was happier. Be patient, keep trying to bulk things up and you will find what works for you. Best of luck! Reach out to us if you need anything.

I too had the same problem after take down. I was told drinking water made more poop.I was told gatorade went thru slower. I take benefiber 3 times a day. You can also use a spray bottle for delicate areas. I also kept a food diary & kept track of what foods bothered me. I also kept track of how many times I went to the bathroom so I could show my surgeon. I had my reversal on ground hogs day 2011. Also try charmin toliet paper the blue kind-helps. I travel with it.

I went back to work part time St. Patrick's day learned how to adjust my schedule like eating first thing in am so I could go to the bathroom before my 45 minute commute. I was also prescribed max doe of lomotil,imodium but you need to talk to the surgeon before and meds are prescibed. More stress & more walking also means more poop. I was getting up every 2 hours or less at night to go to the bathroom. It did slowly get better.

You could have pouchitis, cuffitis, or cdiff infection. Or all of those. You need to see your doctor. If your surgeon is not available go see your gi. That be patient motto is useless if you have any of those things. My post takedown days were exactly as you are describing. For one month i listened to other jpouchers and my surgeon's nurse and then my surgeon saying ...it will get better. I finally got back to a gi who scoped me and told me i had severe pouchitis and severe cuffitis and that i probably had it even before being released from the hospital. Go see a doc plz.

Well the winner is....C. Diff. So far that's all anyway, just got test results back but haven't been in to see the surgeon. I was concerned about this and wanted to make sure I didn't have any of the suggested issues - pouchitis, cuffitis, or c. diff - and he said I was fine and just taking time to adapt. I've been suffering huge for a week and it was my GP that looked further at my troubles. Thank you all for responding, really helpful. I think I've learned how much I need to be the director when it comes to my own health and not sit back and rely on the specialists - you all are the experts and have given me great feedback. Thank you.

Angela. As awful as this sounds i am glad you have cdiff!!! Hopefully it will be fixed with one round of some evil antibiotic. Make sure you get another cdiff test for the all clear signal.

And if you still have problems those itis things can coexist with cdiff.

And yea for you for stepping up and taking charge of your health.
best wishes