First week of functioning J pouch after take down

Hello, this is my first post. As I have stated in the subject line this is my first week with my J pouch. The first 48 hours after surgery were absolutely dreamy. The bowel movements were coming somewhat frequently, but to be expected,  there was no pain and they let me go home early from the hospital. And then everything went down hill. 

 My bottom is in constant pain and burning. I’m using a zinc oxide ointment meant every single time I go. After cleaning everything with wet wipes. I have a hard time walking anywhere without feeling extreme urge to mess my pants. I don’t feel comfortable leaving house, or even my bed. When I do go it’s like my body is taking over, Even possessed. I try not to push too hard but it’s like I’m trying to push out a baby. I have to stand up several times and try to relax, but yet do kagels because I feel like my rectum might be prolapsing.   And then I have a hard time peeing because everything is so tight and clamped down. 

My doctor’s nurse prescribe Valium, thinking that muscle relaxer would help,  but all that does is cause more accidents. I almost never make it to the bathroom. And when I am in the bathroom they will only be a little that will come out and then I stand up to my ritual of kagels and trying to relax to allow myself to pee, then I clean up and all of a sudden I have to sit down and do it all over again. 

 I understand this is normal. This is my body learning how to function with this J pouch. But some of the posts that I’ve seen on this forum already have me scared to death that I made the wrong decision. Not that I had much of one, the Ulcerative colitis was so bad in April that it nearly took my life. I bleed out so badly I needed 4 blood transfusions. So I chose this surgery,  and it feels like I’m right back with the ulcerative colitis only without the bleeding and weakness from weight loss. I am a highly active and athletic 51-year-old single woman of 2 teenagers and I’m really hoping somebody can give me some encouragement that I will get past this and be able to live life outside of my house within the eight weeks My doctor has advised that I take off of work.

 

Original Post

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!

Add Reply

Likes (0)
Copyright © 2018 The J-Pouch Group. All rights reserved.
×
×
×
×