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Officially starting step one towards j pouch on Monday!!!

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Ulcerative Colitis
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Posted 6/26/2017 5:33 AM (GMT 0)

ramesses said...
wow that was a quick decision. my doctor has been trying to convince me for years now and i'm still hesitant. he said that once i get it done, my bowel movements will never be normal. i'll be going several times a day like 5 to 6 and i just don't see that as living a normal life. that means i will never be able to do anything in a day that doesn't have a bathroom close by.

It's certainly not perfect, but I go to pee a few times a day, so I can't be without a toilet indefinitely regardless. I still pee more times than I go #2, even with a jpouch. It's not ever going to be like you were with a perfectly functioning colon, but the reality for some of us is that we do not, and never will have, a perfectly functioning colon. I know in my case, the pain, drugs, expenses, toilet trips, urgency, frequency, were all impacting my life drastically before surgery. While it's not perfect post-surgery, ALL those things I just mentioned are gone, with the exception of frequency. For me though, this is much less frequent because I could have gone 20x+ a day with UC... I would starve myself to get through a day of work. Now, I eat whatever i want and going to work is not a problem in the least. I can actually go the whole 8 hour day at work without using the toilet. It depends on the day though. I have done so much more since getting my jpouch, than I did the whole time I had UC, and I only got it a year or two ago. I seriously lost years of my life for no reason. Life with UC isn't "normal" either. Most people don't take tons of drugs. Most people don't get frequent blood work, infusions, go to doctors appointments, end up hospitalized, eat like a bird... Most people don't hit their maximum out of pocket on their insurance. Normal people don't worry about flare ups, or where the toilet is, whether they will make it to the toilet... There are a lot of abnormal things about living with UC. Living with a jpouch has it's own "weirdness", but at least I am not worried about whether I can get to the toilet and I never worry about paying for drugs/doctors, or whether I "can" do something. I feel very capable with my jpouch. I always felt very limited living with UC.
Posted 7/1/2017 6:33 AM (GMT 0)
So update... I am finally home after my 3 week stay in the hospital. I had my 1st step surgery on June 19th and was released earlier today. I experienced a decent amount of pain in the first few days but that mostly went away in the stomach besides random pain in the incisions but nothing unbearable. The pain more so comes from joints and body. I still have swelling in my legs due to low albumin but that is slowly getting better as well. I feel...odd..it feels good to be home but sucks to be still restricted in things I can do. It's obvious o shouldn't expect to jump back into life but I am so happy to have gotten rid of that colon that I feel I should be on top of the world rn haha. But obviously I cannot bc that's not real life I need to recover.
I still can't sleep on my side or lay all the way back so my back is killing me. I can't get to my bathroom or bedroom upstairs so I sleep on my couch and empty my bag in a measuring container. I got so use to doing it inside the toilet at the hospital and it became secondnnature almost. They do want me tracking my output thru measuring so I guess I have no choice anyway hahah.

Basically the surgery went great, it saved my life, I'm just impatient haha. I Do realize that it only goes up from here I just wanna be there. But I just want u guys to know that things are going great and I just need to work hard and rest to get back!!!
Posted 7/1/2017 11:23 AM (GMT 0)
Hang in there as the discomfort and restrictions are just temporary. The new UC-free you is just starting to come into focus, just give it a bit more time and that image will become crystal-clear smile
Posted 7/1/2017 7:00 PM (GMT 0)
Ipoop, you're always so positive I love it. I am very positive about this as well tho creeping thoughts of "ugh" enter but nothing crazy. I'm eating pretty well open, burgers, eggs, and I have a huge fascination with chocolate. I never really was a huge candy eater but it's my comfy food now. Maybe losing 60lbs over 4 months made My body crave fatty stuff hah My mom's making her famous spaghetti with meat sauce now which is exciting bc I'm able to have foods i never woulda dreamed of while diseased. I know soon enough breaded chicken and some Chinese food is coming and I'm excited but I will wait no rush i have so many non UC friendly foods to know as it is since that's soooo restrictive.
Posted 7/1/2017 7:17 PM (GMT 0)
Not trying to rain on your parade but be careful the first month or so with what you eat. Your intestine is swollen from the surgery, you are at a higher risk for a blockage. Make sure that you chew your food very well.

If you get a blockage there are a couple of tricks to clear the blockage. Hot coffee or tea, wine (works great) or grape juice & a heating pad or a hot shower.

Enjoy your new freedom
Posted 7/1/2017 7:28 PM (GMT 0)
Actually that's my next question, coffee other than the faster output is it ok to go with
Posted 7/1/2017 7:34 PM (GMT 0)
Yes, it is ok. Just remember that you are at higher risk for dehydration so make sure that you drink enough fluids to stay hydrated.

As your intestine heals things will slow down and you won't have to empty as often.

I would drink coffee all the time without any issues. You may want to empty your bag if it is partial full prior to drinking the coffee.
Posted 7/1/2017 7:43 PM (GMT 0)
I don't mind emptying often it's good practice honestly do thanks for that. Water gets boring after awhile and I'm wondering what drinks are good for hydration that have taste haha. I have some Tropicana watermelon drink and some v8 fusion but I'm wondering if they help or not. Also I love my lactaid milk does that help hydrate . I doubt it haha
Posted 7/1/2017 7:44 PM (GMT 0)
Btw thanks for the quick replies with good info
Posted 7/2/2017 2:20 PM (GMT 0)
I drink a lot of lemon water. I've cut out most sugary drinks and artificial sweeteners.

At the hospital they gave me Gaterade G2 at the hospital.

Try to keep the carbs down in the future. Carbs are the food for bacteria & bacteria produces gas which can be uncomfortable the first few months after getting your jpouch.
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