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ByeByeUC

HealingWell Forum
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Member Profile
Display Name
ByeByeUC
Profile Created
2/26/2011 4:33 PM
Last Seen
1/14/2021 11:16 PM
Total Posts
4572

Last 50 Posts

Remicade - At what point do you quit?

Hi! Long story Short I exhausted all the meds and I had to have J pouch surgery. This was 10 years ago. Remicade was pretty much my last shot and I failed that. I know surgery is terrifying. Believe...

1/8/2021 9:59 AM

Ulcerative Colitis
Just checking in

Posted Today 11:52 AM (GMT -5) I hope you have continued good luck with the xeljanz. That one must have come out after my surgery. I will look up that thread and see if I can add some help. I horse...

1/8/2021 9:54 AM

Ulcerative Colitis
Just checking in

Hello everyone! I haven’t been here in a long time. With this ridiculously crazy year we had I actually just realized I had my 10 year J pouch anniversary! I can’t believe it’s been 10 years already....

1/8/2021 5:23 AM

Ulcerative Colitis
How did you decide when to have surgery?

I suffered for 7 years with severe UC. It came on fast and strong and never let up. I went through all the remedies that were available at the time. All failed. I didn’t have much choice. I had j...

9/22/2020 3:31 PM

Ulcerative Colitis
Wow. Tough bunch of days. I’m home

I don’t come to this site very often anymore but I did last week and saw your post. Happy to read you’re home now. Scary stuff out there! Be well!...

4/2/2020 3:14 PM

Ulcerative Colitis
Have both Corona and Pnuemonia

Sending healing thoughts to you for a full recovery. You can do this fellow j pouch warrior!...

3/27/2020 3:57 PM

Ulcerative Colitis
Three year j-pouch anniversary

Congratulations and happy to hear you are doing well. Today marks 9 years since my takedown surgery. I can’t believe it’s been that long! Life UC free has been good! Continued good health to you!...

10/8/2019 2:42 AM

Ulcerative Colitis
Surgery is not always a cure

No, it isn’t necessarily a cure but it can help people live a better life when they are sick and suffering from severe UC that can not be controlled. I don’t know where I’d be right now without...

10/3/2019 5:13 PM

Ulcerative Colitis
9 years already with my J Pouch

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....

7/14/2019 1:33 PM

Ulcerative Colitis
9 years already with my J Pouch

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...

7/14/2019 7:18 AM

Ulcerative Colitis
9 years already with my J Pouch

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....

7/13/2019 8:02 AM

Ulcerative Colitis
9 years already with my J Pouch

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...

7/12/2019 4:07 PM

Ulcerative Colitis
9 years already with my J Pouch

thanks! No, things have been normal for me since the colon removal. Nothing else has popped up. (Knocking wood!!)...

7/11/2019 5:44 AM

Ulcerative Colitis
9 years already with my J Pouch

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...

7/10/2019 4:45 PM

Ulcerative Colitis
9 years already with my J Pouch

congratulations on getting through the surgeries. :) 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...

7/9/2019 3:19 PM

Ulcerative Colitis
9 years already with my J Pouch

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...

7/9/2019 11:38 AM

Ulcerative Colitis
Surgery vs Biologicals

I went the Biologic route when everything else failed and didn’t have any luck with that either. I had j pouch surgery 9 years ago this month and it’s been the best decision I could have made. So so...

6/9/2019 6:25 AM

Ulcerative Colitis
Gastro prescribed Prednisone for Swollen Colon

No one likes to take prednisone but if your doc said you’re that inflamed, I would follow his orders and take it to get that inflammation under control....

12/18/2018 4:02 AM

Ulcerative Colitis
Colectomy or new drug?

Surgery is a blessing if you’re one of those people like me who failed every medication. So having been through it all, I will recommend surgery every time for someone who is the right candidate for...

12/18/2018 3:58 AM

Ulcerative Colitis
At what point did you decide to have surgery?

I had zero quality of life left. And when you cannot leave the house without having an accident, it’s time to take a hard look at what options you have left. I chose j pouch surgery because I wanted...

11/19/2018 5:41 PM

Ulcerative Colitis
OK question for those finished with surgeries???

Everyone is different. I know people with j pouches who have watery stool all the time and that’s their normal. Then I know people who have semi formed stool and that’s normal for them. (You’ll never...

9/30/2018 4:29 AM

Ulcerative Colitis
Two year j-pouch anniversary

Happy anniversary! I’m coming up on 8 years ..... can’t believe that! Things have come a long way and people do not need to be so afraid of this procedure if they truly need it. It’s been a...

9/26/2018 5:58 PM

Ulcerative Colitis
J pouch now, cured?

It’s complicated. I consider myself cured because I’ve been symptom free since my j pouch surgery. But yet medically, I’m still considered to have IBD. Once you have an autoimmune disease, you have...

9/26/2018 5:51 PM

Ulcerative Colitis
Takedown Tomorrow - Final Step!

You have a good list there. I never ended up needing anything other than the Calmoseptine ointment. I was fortunate and had an easy transition. Wishing you the same! No matter what though, usually...

9/17/2018 1:34 PM

Ulcerative Colitis
2 weeks post surgery

Be patient with yourself. It takes time to heal after such a complex procedure. You’ll notice improvements as the weeks/months go by. Soon it will be a distant memory. I can’t believe I’m coming up...

9/5/2018 5:32 PM

Ulcerative Colitis
8 years post j pouch surgery.....life is good

I haven’t posted in a long time so I thought I’d stop by and say hi. My j pouch surgery was 8 years ago this past June and my takedown anniversary is coming up in October. Everything has been...

8/15/2018 9:47 AM

Ulcerative Colitis
J Pouch - Questions

Yes, I recommend it if you’re a candidate. Yes, to me it was TOTALLY worth reversing the ileostomy. For me emptying the j pouch is a quick and easy as urinating. Just sit and go. I go 4-6x a day....

7/4/2018 8:51 AM

Ulcerative Colitis
Please help. Recovery after step 2 j pouch surgery

Step 2 of the process is the most involved step and it’s a HUGE procedure. It takes time and lots of patience on your part to heal. I remember when I was in the thick of it and feeling like it was...

7/4/2018 8:44 AM

Ulcerative Colitis
Is surgery next?

If nothing is working....seriously consider it. I was in your same predicament when I completely and utterly had enough. I opted for j pouch surgery. BEST THING I EVER DID. It is not easy and you...

5/21/2018 6:38 PM

Ulcerative Colitis
Struggling along after surgery #2-with a hole in incision

I changed the bag and wafer daily....I couldn’t stand it. That loop was the absolute pits. I’m impressed you’re getting 3 days out of it! Bummer about the incision. I had a c section style incision...

4/24/2018 5:28 PM

Ulcerative Colitis
After 2nd surgery bag is a serious problem

oh please don’t feel bad for me! Having my colon removed and getting a j pouch was the best thing I ever did! A few temporary setbacks immediately post op is nothing compared to the horrid UC flares...

4/21/2018 5:18 PM

Ulcerative Colitis
After 2nd surgery bag is a serious problem

The loop ileo is notoriously bad. Hopefully your reversal surgery isn’t too far off. I had a tough time with my loop too. Unfortunately I wasn’t able to get any real solutions because my stoma was so...

4/20/2018 5:32 AM

Ulcerative Colitis
Need advice and input on SURGERY

I wish you all the best hunting for remission!...

3/4/2018 4:02 PM

Ulcerative Colitis
Need advice and input on SURGERY

Do you have pan colitis effecting the entire colon? Steroid dependency is a huge deal and something you don’t want to deal with down the road. It’s hard for anyone to say what you should do based on...

3/4/2018 2:55 PM

Ulcerative Colitis
Remicade or surgery

I did decide to try remicade before I had surgery. It didn’t work so surgery it was after that. Looking back I wish I didn’t waste the time on the remicade but hey, you just never know if it’s going...

3/2/2018 5:37 PM

Ulcerative Colitis
J-pouch reversal scheduled

If all goes according to plan, you should be able to get some work done from home for your job after 2 weeks. My takedown surgery was textbook and 3 weeks post op I took my kids out trick or...

2/25/2018 3:40 PM

Ostomies
Surgery Tomorrow

Not sure exactly what you’re having done but I had j pouch surgery 7 years ago and it’s been a HUGE blessing. I don’t take a single day for granted being UC free. Best wishes for a speedy recovery!...

2/21/2018 10:18 AM

Ulcerative Colitis
What to expect from Step 3 of j-pouch surgery

I was very fortunate and takedown recovery was pretty easy for me. I was only in the OR for 30 minutes and I had very minimal pain when I woke up. The soreness was mainly from the stoma sutures. I...

2/21/2018 10:13 AM

Ulcerative Colitis
J pouch experiences

No horror story here. I have had my j pouch for 7.5 years now with no issues. My sister and uncle have j pouches as well...long time....27 and 20 years for them....no issues there either. It's a...

1/25/2018 1:59 PM

Ulcerative Colitis
How long after surgery did u take walk,drive car,go to store etc

Took a short walk about a week after being released from hospital. It was summer time so I was itching to get outside. Also about a week after being home I went to the store but didn’t drive. Doctors...

1/18/2018 1:09 PM

Ulcerative Colitis
Can't pee after surgery. Any suggestions???

It’s normal after any major surgery. Don’t worrry it will happen....

1/12/2018 4:57 PM

Ulcerative Colitis
IBD-surgery?

Just wanted to say I was an extremely severe case of pancolitis and I had a successful j pouch procedure. Like no joke.....I had it BAD. It’s been 7 years now with my j pouch and I’ve had zero...

1/8/2018 3:15 PM

Ulcerative Colitis
Surgery or not surgery that is the question?? i need surgery

with my j pouch I use the bathroom about four times a day. I had my surgeries at Jefferson University Hospital in Philadelphia. PS - it's important to know that going to the bathroom with a J pouch...

8/27/2017 12:47 PM

Ulcerative Colitis
Am I crazy for not wanting a J-Pouch?

I did not read through most of this thread but I just wanted to say my j pouch has been a life saver for me. When I had the temporary ileostomy in place I had a really tough time with it (not...

8/27/2017 5:34 AM

Ulcerative Colitis
Surgery or not surgery that is the question?? i need surgery

Well I will say this.... It's a lot better to have this procedure done while you are somewhat well than if you're really sick. You'll heal faster. I had surgery 7 years ago and it's been a life...

8/27/2017 5:28 AM

Ulcerative Colitis
Average amount of time between surgery if its two step?

I had a 2 step procedure and it was a little over 3 months between step 1 and 2. Probably would've been a little bit sooner but I had a complication that set me back a little bit. Hope for the best...

8/16/2017 9:29 AM

Ulcerative Colitis
J pouch surgery 2/3 pain

Can you describe the pain/location a little more?...

8/3/2017 6:20 AM

Ulcerative Colitis
J Pouch Surgery

I had the procedure done 7 years ago. Best thing I ever did! I had it done in 2 steps. It was tough...won't sugar coat it....but entirely worth it! My advice is if you're seriously contemplating it,...

7/25/2017 7:21 AM

Ulcerative Colitis
Question for those that went with surgery

For me it all came down to quality of life which was non existent since my UC was so severe. Take a good hard look at your quality of life: Can you work? Can you have a social life...i.e. Can you...

7/18/2017 9:44 AM

Ulcerative Colitis
Surgery, finally

Best of luck! Best decision i ever could have made. THANK GOD for this j pouch of mine! Wishing you a speedy recovery!...

7/10/2017 2:21 PM

Ulcerative Colitis



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