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9 years already with my J Pouch

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Ulcerative Colitis
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Posted 7/9/2019 6:38 PM (GMT 0)
I haven’t posted in a really long time. I just realized today I missed my 9 year anniversary of my J Pouch surgery at the end of June. I can’t believe it’s been that long! Just here to say that it’s been 9 years of smooth sailing without my diseased colon. So happy I had this procedure. If there are any new members here that have any questions about the surgery, I’d be happy to help. I know first hand that options can run out and you’re left scared to death to face a huge surgery as this one. My sister had the procedure done many years before I did so I had her to lean of at least. Please feel free to reach out!
Posted 7/9/2019 6:59 PM (GMT 0)
Thanks for checking in and glad to hear you're doing so well! Wow, has it been that long?
Posted 7/9/2019 9:51 PM (GMT 0)
Hi I just had my surgeries done. Do you take any probiotics? Do you take imodium or lomotil? Have you ever had pouchitis?
Posted 7/9/2019 9:54 PM (GMT 0)
I am happy to hear you've been doing so well. 9 years free of drugs and illness is amazing. I think I am coming up on 4 years in the fall. Crazy!!
Posted 7/9/2019 10:19 PM (GMT 0)

Andrina said...
Hi I just had my surgeries done. Do you take any probiotics? Do you take imodium or lomotil? Have you ever had pouchitis?

congratulations on getting through the surgeries. smile No, I’ve never taken any pro biotics but I do enjoy eating yogurt so that certainly doesn’t hurt. No Imodium. I took that when I had my temporary ileo and it turned my output to glue so I’ve steered away from it ever since! No pouchitis. (That I’m aware of anyway).
Posted 7/10/2019 10:56 PM (GMT 0)
Congratulations of the 'old' found health! Bit of a personal question...but how many times a day do you go to the bathroom, what can you eat, and do you feel bathroom urgency?
Posted 7/10/2019 11:45 PM (GMT 0)

Sam1996 said...
Congratulations of the 'old' found health! Bit of a personal question...but how many times a day do you go to the bathroom, what can you eat, and do you feel bathroom urgency?

Thank you! bathroom trips a day are average 4 to 6. Sometimes less than 4, sometimes more than 6. I stopped counting years ago to be honest. It’s not like going to the bathroom with a colon (sick or healthy). It’s as quick as urinating. I eat whatever I want. But I do try to eat healthy these days. I have zero urgency.
Posted 7/11/2019 2:14 AM (GMT 0)
Had 3 step in 2018,everything great except for hernia but that's work i do more then surgery.I went to bathroom once today,average of 1-2 per day unless i'm home and eat more.Be well all
Posted 7/11/2019 10:56 AM (GMT 0)
Congratulation!

Did you observe any change of Extraintestinal symptoms after removing colon?

Thank you
Posted 7/11/2019 12:44 PM (GMT 0)

Oligodar said...
Congratulation!

Did you observe any change of Extraintestinal symptoms after removing colon?

Thank you

thanks! No, things have been normal for me since the colon removal. Nothing else has popped up. (Knocking wood!!)
Posted 7/12/2019 6:07 PM (GMT 0)
I appreciate your answers. It all sounds so good.

I'm still recovering and I know I need patience. So far I'm doing good but I have some not so serious issues that bother me. I feel pressure in my bum especially after going to the restroom and I can't sit. I'm continuously dropping weight and I'm anxious to eat because of gas pains and fear of blockages. I'm also still cramping like I was when I had UC. I hope these things get better with time.
Posted 7/12/2019 11:07 PM (GMT 0)

Andrina said...
I appreciate your answers. It all sounds so good.

I'm still recovering and I know I need patience. So far I'm doing good but I have some not so serious issues that bother me. I feel pressure in my bum especially after going to the restroom and I can't sit. I'm continuously dropping weight and I'm anxious to eat because of gas pains and fear of blockages. I'm also still cramping like I was when I had UC. I hope these things get better with time.

It does take some time. You’re still pretty fresh out surgery. It took me several months to feel like myself again. The one thing I had to deal with was a stricture after my takedown surgery. Scar tissue had started forming narrowing the passage and it was giving me a lot of pressure and discomfort and of course difficultly emptying. I had to go back to my surgeon several times for him to dilate the stricture. That wasn’t fun at all but once it was resolved it was smooth sailing. Your weight will rebound eventually. It took me almost a year to put the weight back on that I had lost from being sick and the surgeries. This is such a tough thing we went through. We deserve a medal that’s for sure!! It’s all worth it in the end. I hope you start feeling like your old self again real soon.
Posted 7/13/2019 3:54 AM (GMT 0)
BybyUC That’s awesome you are feeling great it gives others the feeling of hope .
Posted 7/13/2019 4:00 AM (GMT 0)

3timechamp said...
Had 3 step in 2018,everything great except for hernia but that's work i do more then surgery.I went to bathroom once today,average of 1-2 per day unless i'm home and eat more.Be well all


3TC I want your life... really 1-2 a day lol sorry I am lost for words
And once today ... that’s it I am moving to NY it has to be better there .. I am clogging up the Canadian sewage plants 😬 with my bathroom trips .
Posted 7/13/2019 3:02 PM (GMT 0)

3timechamp said...
Had 3 step in 2018,everything great except for hernia but that's work i do more then surgery.I went to bathroom once today,average of 1-2 per day unless i'm home and eat more.Be well all

glad to hear you’re doing well. My sister has a j pouch too and she’s like you only 1-2x a day. I wish. Lol. But it’s all good going more times a day and not being sick!! Be well.
Posted 7/13/2019 9:58 PM (GMT 0)
ByeByeUC, have you ever had pouchitis or any other complications? Or has your j-pouch healed and been a non-issue since the early days?
Posted 7/14/2019 2:23 AM (GMT 0)
Valli and Bye Bye,i don't eat much breakfast.I get Dunkin Donuts for the crew at 10:00 and i have a donut .Lunch is pretty light.Dinner im trying not to pig out.Hernia changed my thinking,i don't want a gut which could increase chance of another incisional hernia.So by eating lighter all day i'm going to boys room less.Today i was off .Had small apple turnover for breakfast.French Toast for lunch.2 Tacos tonight.Went to bathroom 3x. Funny bc constipation was issue with me and siblings,grandma etc .Now colon was big cause of constipation.Now i dont have colon but can still hold stool in.Do i have constipation with my Niagra falls??? Stool is always loose unless i use imodium/lomitil
Posted 7/14/2019 2:18 PM (GMT 0)

MarkWithIBD said...
ByeByeUC, have you ever had pouchitis or any other complications? Or has your j-pouch healed and been a non-issue since the early days?

No, I’ve not had pouchitis. I had some issues with an abscess developing immediately post op from my first step. That was pretty rough as i had to be re hospitalized and have a drain put in. Then the second step (takedown) post op I dealt with an anal stricture but that resolved itself pretty quickly. So only complications immediately post op which is common and to be expected. After everything healed it’s been smooth sailing since.
Posted 7/14/2019 6:30 PM (GMT 0)
I feel like you need to have a really good team doing the surgery and after care. It's why i didn't go that route... because I don't trust the doctors in my town.

I'm glad it worked out well for you!
Posted 7/14/2019 8:33 PM (GMT 0)

MarkWithIBD said...
I feel like you need to have a really good team doing the surgery and after care. It's why i didn't go that route... because I don't trust the doctors in my town.

I'm glad it worked out well for you!

thanks! Having a great surgeon is EVERYTHING! I had to travel a bit of a distance to go somewhere I trust. Would never be able to have a surgery like this in my town.
Posted 7/24/2019 4:21 AM (GMT 0)
Glad to hear you are doing so great! It gives me some hope/relief if I ever do end up having to go that route.
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