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Hello All! I am new to the forums and am looking for some advice on caring for a j-pouch and what to expect post surgery. Last fall, I had a very fast acting case of ulcerative pancolitis that perforated my colon. I had a sub-total colectomy and end ileostomy created to save my life. I am a lucky girl. 

In May, Dr. Remzi (formerly Cleveland Clinic) created a j-pouch and loop ileostomy, and I am doing very well. I am working out, running, and feeling better everyday. 

My takedown is scheduled for Sept. 19th, and I am looking for some advice. I'd imagine there are forums that entertain this very question, but after going through 6 pages I haven't seen it yet, so I apologize if this is repetitive...

What is your best advice on what to expect after this surgery, caring for your pouch right out of the gate, or even long-term "wish you would have known" things?

I should also mention that I have Celiac's Disease who also eats largely anti-inflammatory, am a runner and boxing instructor (fitness addict), and have adapted very quickly thus far. I have also been in the management side of Food for my entire career and am a foodie with IBS & IBD (if such a thing exists!) I have loads of food advice to give to this group!

-Kati

 

 

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Sounds like you are well equipped with lots of knowledge about health, fitness, and diet, so I doubt we can provide you with any special insight. The main thing I would stress is hydration, as it can be the biggest issue for us, especially in the first few months. Other than that, it is trial and error. It seems that you already know foods that are problematic for you, so that is a head start!

Jan

I recently had my takedown (Aug. 8).  I brought Calmoseptine, pads, and soft toilet paper with me to the hospital.  I didn't need the toilet paper (there's was fine and they also provided soft disposable cloths).  I started Calmoseptine right away.  It only took one day for things to start working for me.  I have been careful with my diet, so no real issues so far.  Only one accident at night (first night home).  

Good luck!  

 

Hello, Kati. Be prepared to stay in hospital for a few days until your new connection can pass gas, and then stool, and you are able to tolerate food. You will pass gas when your bowels "wake up" so walk the hospital's hallway as much as humanly possible, every hour if you can to wake your new plumbing. I packed a travel bidet to hospital (squeeze bottle with angled nozzle) to clean carefully to avoid burned skin. Use barrier cream even if you don't have burn at the beginning. Bile may be the first substance to come out so be careful to keep clean It will come (the burn) so you may as well start protecting your skin right off. Stock up on barrier cream, and unscented soap. Also Lysol wipes to clean your bathroom (you'll be in there a lot in the beginning.....)  

if you don't already have one, buy a bidet attachment for your toilet. The travel bottle you can use when you are away from home. Carry baby wipes when away from home so you don't have to use dreaded toilet paper. Eat soft foods at first so you don't have obstruction. Stock Metamucil. I keep a bottle of water in every room so I always remember to drink. Best wishes, Kati.

First off congrats on your upcoming take down in September my prayers are with you  I have my takedown in February this year so believe me the people on this site are completely wonderful and very knowledgeable and what they've already told you is 100% accurate what you would need and healthy care of yourself but it seems like you have a pretty good idea how you'll need to take care of yourself  ready which is great.  But remember Charmin ultra soft toilet paper and  Camposeptine is your best friend. Good luck 

CTB23, I had my takedown on Aug 1 and was wondering how you are progressing? I'm still have Several bowel movements (10-15 times a day even with taking an Imodium before every meal) and I feel like I have to hold it every 5 minutes most of the day. Butt burn is an everyday thing and I've been taking everything out there to try and control the gas ( I have been taking 3 beano before every meal along with the Imodium). Then at night I typically have to go around 3 to 4 times a night do to and accident or just having to go. I know/hope things will improve in the next few weeks but I wanted to see how you were feeling since we had our takedowns around the same time.

Actually, I am doing well.  I am typically having 5 trips to the bathroom a day, 3 during the day and 2 at night, although I went from 9:00 p.m. to 6:00 a.m. today.  I have been out several times since my second week home, especially for breakfast, shopping etc, and taking at least a 20 min. walk after dinner.  I am only on Pepto right now, and sometimes forget to take that.  There doesn't seem to be anything special I can recall doing.  I do follow the low residue diet pretty closely and drink diluted Gatorade (half water).  That's about all.  Butt burn has not been bad, only when I had very watery stool, I did get a bidet and use it all the time.  I'm sure things will get better for you.  Good luck!

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