Newbie with tons of questions

Hello, Peanut. Lots of good questions! You will be well prepared for a quick recovery. I'll just answer the hydration question. For hydration try drinking broth, not just water. Water goes right through you. Try canned soups because it will supply a lot of the salt you will need to keep fluid in your system. Don't get the ones that say "no added salt" because you do want the salt. Try some canned chicken noodle soup, clear canned broth where you can add your own cooked chicken or rice, or make your own vegetable stock and keep jars of it in your fridge. Try to avoid the creamed soups -- too much carbs, I think. Other members will chip in with their tips to help you. Welcome here!

Thanks Winterberry! I was eating homemade chicken soup everyday for lunch but because my output is so incredibly  high my doctor has me on only foods that slow down output (all carbs basically w/ some protein) and I'm only allowed to drink 4 cups of Pedialyte or the like a day plus doing my 2 bags of fluids a day. I miss my soup and sick baked potatoes and bagles!  I can't wait to get rid of this bag. Two weeks from today!!!!!!

Hi! The order of my surgeries was a little different in that I had a total colectomy/ileostomy and THEN had takedown surgery where the j-pouch when created. So I can't speak to that specifically, but I can offer some general advice. 

If you're having trouble with soups, you can try incorporating sea salt into your diet/regimen instead. The minerals help with hydration. You can, of course, add it to food but I often just take a pinch with some water. The ratio recommended to me was a pinch every 32 ounces OR 1/8 of a teaspoon per day. A good rule of thumb is to drink half your body weight in ounces every day, but that's considered "maintenance." To really hydrate, more is better. I try to up that number by about 10-20 ounces for good measure.

The biggest thing I felt underprepared for was how much irritation I would have around my rectum. I wish I had thought to bring soft toilet paper/baby wipes with me to the hospital. And some kind of diaper rash cream too. At first I just used a diaper rash cream that was high in zinc oxide once I was home, but once I became less sensitive down there I started using Calmoseptine and I like it. 

Feel free to message me anytime! I'm about a month and a half out from my last surgery. Still learning/recovering, but I'd be happy to answer anything I can to help as you recover! Good luck with your surgery! 

Thanks Kayln! I do use Sea salt on everything and add it to water also. Thanks for the tip about bringing the toilet paper and ointments to the hospital! I never would have thought of that. I had to use Calmoseptine before my surgery because I was going 30 times a day and most of the time I was irritated and bleeding. I will bring that and diaper rash ointment with me also. That's great advice I never would have thought of.

I too was put on a high sodium diet after takedown.  Once takedown happens your electrolytes will be out of balance until the J Pouch adjusts, and it will adjust.  The best tips I can offer are to take things really slow with your diet and incorporate new foods one at a time and very distinctively so you can isolate a problem easily.  As far as butt burn, I did have the problem after takedown and it lasted some months.  Initially there is too much alkalinity in the stool and that is what causes it.  Again, the pouch usually adjusts and the ph balance returns to normal.  I tended to use zinc oxide ointments that were not too thick (lower % zinc oxide), because the higher concentrations, while providing a better seal, aren't really practical if you are moving your bowels frequently and you end up sealing stuff in rather than sealing it out.  It's pretty much trial and error what will work for you as far as ointments, food, fluid intake, amount of electrolytes you will need etc.

The high sodium foods I consumed and which were recommended by my doctor include V-8 juice (sodium level off the charts), Gatorade, and Potato Chips.  But don't overdo it.  I celebrated my 30 day takedown anniversary with a sodium party that included pepperoni and anchovy pizza, potato chips and V-8 juice and ended up hospitalized with what was called a sodium overdose (I had severe kidney pain, worst pain of my life and my father took me to ER).  So don't go crazy with it.

Lastly be aware of the potential issue of spasmodic pouch, characterized by bursts of frequent bowel movements after meals.  A lot of patients try to throw imodium at this problem and it will only make it worse.  If the frequency is only after you eat it's a spasmodic pouch which is easily corrected by taking anti-spasmodic meds (levsin, bentyl) 45 minutes before meals.  This was only a problem for me the first year after takedown.  It's due to excessive peristalsis in the aftermath of surgery.

Good luck to you!

Remember to take a travel bidet bottle with you to hospital. In the days and weeks after your takedown toilet paper can feel like sandpaper on the sensitive rectal area. Wiping makes everything worse. Rinsing the area with water and drying thoroughly (even if you have to use a hair dryer) will go a long way to controlling bum fire and raw skin. When away from the house I would carry moistened paper towels in a zip lock baggie -- toilet paper in public restrooms are really harsh.

All great advice! Thanks so much!!!!

Kim, 

i had the surgery you had about 25 years ago. If you're taking opium then that should really help you have better control.  All of us on here need a good mattress liner! For me, if it's nighttime incontinence and cramps then good chance it's pouchitis. I do get recurrent episodes of pouchitis, but it's manageable with medications. I wear panty liners for just in case and underwear that are black just in case.  Of course, I've lived with this most of my life so I may be used to it.  😀

Nurse Butthole 

Thanks Nurse Butthole (absolutely love your screen name! Hahaha)! Unfortunately the Opium doesn't work which is very discouraging. Most medicines that are supposed to slow down or at least thicken up my stool don't work for me. My output has spiked again in the last 5 days to over 3000 cc's everyday. That's with taking 2 Lomotil 4 times a day and 5ml's of Opium 3 times a day and only eating foods that slow down output. And I still have only liquid coming out. Ugh So frustrating, but I only have TWO MORE WEEKS of this Ileostomy! 

I will again reiterate if bursts of output are happening after you eat or have meals, you have a spasmodic bowel and are taking the wrong meds. If they are happening at irregular times, and not after you eat but consistently through the day, then it’s probably just high output and you have done all that you could. Anti-spasmodics like bentyl or levsin, taken strategically enough before meals, will nip a spasmodic bowel issue in the bud. It’s a fairly common issue that can be easily identified and treated but often isn’t because the patient will assume incorrectly that anti-diarrheals will work.

The distinguishing feature of a spasmodic bowel is that the bursts of output (or BMs post-takedown) occur after you eat anything.

I do have bursts after I eat but also have them through out the day. I think my doctor is at a loss right now. 

Has the concept of excessive peristalsis after surgery been discussed with your surgeon? Surgeons are well aware of spasmodic bowels after surgery. You mention speaking to your doctor, is the doctor you are talking about your surgeon? Because this is an issue that should be getting discussed with your surgeon, if in fact it is excessive post surgical peristalsis. I had this issue after takedown and before takedown. Worse after takedown. It’s not an uncommon issue, but I am not certain that is what it is. Certainly bursts of output after eating could be attributed to it.

Yes, my surgeon is who I have been discussing it with. He hasn't mentioned any of those things but I will when I call them today again. I call there at the very least every other day because I've had so many issues. So far this morning in 6 hours I have put out 1600 cc's. Yesterday I topped off at 4100 cc's. This is the highest I have ever been, plus my pouch is working several times a day, so I'm really loosing a lot of fluid. I wonder if he's going to do the surgery sooner now because of this.