I’m about 2 weeks post takedown. Things were going well for me too- then I came home and they went downhill a little bit. But I know it’s just one of the many bumps in this jpouch road. I know it can be overwhelming. At my pre op appt months ago before surgery #1, a nurse said something that really helped me mentally and emotionally. She could tell I was nervous —  She said, when you’re recovering and it gets hard, remember that your doctors wouldn’t be preforming this surgery unless you absolutely, positively required it. 

As far as the butt burn goes- I was told baby wipes were not recommended as they can leave moisture on the skin. I use a portable bidet ($10 on Amazon) and blot dry. So far that’s worked pretty well. 

I hope things improve for you soon. 

I know it’s tough, believe me, I know. The bidet will help tremendously, and patting - not wiping- will help. Use cream every time you go. Lather that stuff on so it creates a barrier! I still use the Coloplast clear barrier ointment and it works really well. I think i was going every hour for the first 2-3 weeks. It’s miserable but it does get better. Try and use food to your advantage with spacing out meals, eating stuff that will bulk you up, like PB, mashed potatoes, etc. 

And finally, talk to someone who understands and can empathize with you. Here is a great place to start or, you may want to talk to a counselor. If you can’t go anywhere bc you’re going to the bathroom so much, consider a social worker that will come to your home. A lot of insurance companies cover it. I didn’t think I needed one when I checked out of the hospital but I wish I had. What does your support system look like! I know that won’t help the butt burn but it may be good overall. Hang in there! 

 Thank you so much for the support! I do have a pretty strong support system.  I have great friends and support from work. Also, There is a woman I’ve been talking to who has been one month ahead of me in this whole process. But she didn’t have the trouble that I’m having right now.

However, there may be a solution. My doctor‘s nurse just prescribed Cipro for me, she’s thinking there could be another pouchitis issue. Something I had after the second surgery. That was surprising to them, but it’s what it was and the Cipro helped. 

 It makes a lot of sense to make sure my fanny is dry Before I put on the ointment.  I will make sure I do that from now on.

Eating is difficult, since I don’t wanna leave my bed. I’ve been trying to space it out but I’ll work better at that.

Oh i also forgot to mention that some people will blow dry before they put on cream- just a thought!! I blow dry my bumb after my am shower every day. Just helps air things out

It is great that you have a resource who is going through things on a similar timeline. That helps big time. Also they have ostomy support groups that you can connect with, even if you’re no longer with an ostomy. They wil sometimes come and visit you. 

The diagnosis of possible pouchitis is a good call. How will they diagnose? Or will your doc just prescribe? My doc wasn’t too keen on prescribing anything without taking a look. And it may be too soon for you to have the doc to take a look at things. Do you have a fever, chills or abdominal pain? All those could indicate pouchitis too. Just a thought.  

Also no appetite means that you prob aren’t getting adequate nutrition to heal. Are you keeping an eye on your electrolytes? Or has your doc done bloodwork to see if you’re on track there?  

The symptoms do seem very similar to the pouchitis I experienced about a month ago. And I’m two hours away from the clinic, so I think that’s why they just went ahead with the Cipro. Since I handled it well last time.

I am a big water drinker, can’t stand Gatorade. But I suppose Pedialyte wouldn’t be a bad idea. I also eat a lot of yogurt, so that’s probably not helping things in terms of thickening the output.  Those are good ideas.   Peanut butter sandwich for breakfast, it is!  I like the hairdryer idea too.  

Carin its gets pretty close to normal without any extra meds. You just need to give it time though alot and alot of patience. I am 4+ months out with takedown . The first 2 months were very rocky. But slowly the absorption increased ,the pain reduced , the consistency got better. For the first 2 weeks I was also scared to leave my room. But 3 months post op. I've been to trekking trips. Just keep a food diary. Eat lots n lots of bananas, oats, brown breads, chicken, eggs, cheese ( if you're not lactose intolerant), rice. In fruits you could try orange or kiwi. Thats what I have most of the times. 

That’s a big help RAJ.  I never know what to eat. I’ve been so confused trying to manage my ulcerative colitis through diet and having no success. The biggest thing I’ve been trying to stay away from is sugar and raw vegetables. But it helps to get your advice.

 Most especially, it helps to just know that it’s going to get better and patience is needed. I can be patient. I’m supposed to be going back to work January 22, which makes it eight weeks after the surgery. Your reply makes that a little concerning, as I am and optometrist, and having been gone so long I’ll be very, very busy with patients. Yet I only get paid per patient so I can’t really cut back the number of patients, otherwise I end up getting paid more to be off of work then to work. But I will deal with that when the time comes.

It just helps to know that it will get better eventually, And it doesn’t seem as though there is anything actually wrong that will prevent me from having the relatively normal life I’ve been promised. Especially with as active as I am.

Thank you!

had my takedown 3 years ago. Your description of how you feel was like bringing up a bad memory. Two things I want you to know. 1. It will get better.  2. And I wish my doctor had told me this upfront,-you want to bulk up the bowel movements.  Therefore take a serving of Metamucil. It does wonders for avoiding butburn. Try it once. It is part of my daily regiment so I don’t have to worry about all the details of what I eat. I am at the point where I take it twice a day and I felt like a new person. No more but burn. 

The urgency that you were feeling is your jpouch adjusting.  It will get stronger and you will be able to hold your bowels.  It’s true .

dont despair, although I know it’s easy to do.  METAMUCIL will be your friend  

Thank you so much for that assurance! My Dr. now has me taking Benifiber 3xa day and Imodium at least once a day.  I’m 3.5 weeks out now.  It’s getting a little better, but still difficult to be out in public walking for too long.  Like grocery shopping sucks.  

But its sooooo helpful to hear these troubles will go away and life will get to normal.  

Thank you!  

Hi Carin,

I had my reconnect a month ago and my symptoms right now are very similar to yours. How are you doing now?