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To those that have made the decision.. Surgery.

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Ulcerative Colitis
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Posted 7/11/2012 10:15 PM (GMT 0)
I am ready to opt for the inevitable surgery, anyone who has made that decision please post your email I have a few questions about it that I wish to ask in private. Anyone that can assist in this extremely tense time will forever be appreciated.
Posted 7/11/2012 10:38 PM (GMT 0)
Hi Brian,

I will be happy to help answer your questions but I won't post my email in a public forum. You can ask right here or if you go to jpouch.org they have private messaging. My user name on there is mgmt10. I would say I could email you but I don't recommend you posting your email either. I learned that lesson the hard way.
Posted 7/11/2012 11:07 PM (GMT 0)
Brian post your questions here man. Whatever questions you have, I want to know the answers to them also.
Posted 7/12/2012 1:20 AM (GMT 0)
The ostomy board here on HW can be very helpful for surgery related questions. I agree with somedude to an extent, I am sure your questions would be valuable for all of us UCers. I also understand if you want to keep it private. I think one of the most important things when choosing surgery is that you choose an exceptional surgeon.
Posted 7/12/2012 1:50 AM (GMT 0)
    Absolutely, post em here Brian.   We just let it all hang out...well, most of it anyway.  Poop is our major topic in here.
Posted 7/12/2012 2:32 AM (GMT 0)
You can find my email address in my profile and email me. I had jpouch surgery 11 years ago.

Sue
Posted 7/12/2012 4:35 PM (GMT 0)
My email is in my profile too, and I had surgery 5 years ago. You can email me with any questions you have, I'm fixing to go to Jamaica, so I don't answer right away I don't want you to think I'm ignoring you!
Posted 7/12/2012 7:31 PM (GMT 0)
     Brian, I think my email is listed too...not sure.  But, like summerstorm...I have a permanent ileo.   Suebear would be able to answer your j-pouch questions.
Posted 7/15/2012 3:04 AM (GMT 0)
I will post some publicly -

BG: I have a colonoscopy monday, if the flare is as bad as it seems to be I will be opting for the surgery. I have met with the surgeon and everything just is depending on Monday, however I am getting cold feet. It is a hard decision to make but I know that it is the best option at this point - I refuse to go on Humira, I refuse to do another course of Prednisone. My Drs have just started me up on a Cipro/Flagyl course kind of as a last hope to end this flare before going for surgery but my GI team is behind my decision not to go onto Humira or do another course of Pred.

The surgeons I met with are excellent.


Questions (for those post surgery):

How many times a day do you go to the bathroom now?:
How frequently do you see blood?:
Are your stools hardened or diahrea?:
Have you had other health issues arise since losing your colon?:
How long was the process from first surgery until takedown?:
Are you happier now than you were before the surgery?:
How bad was the pain?:
Did you miss work/school, if so how much?:

Thats all I can think of for now.. Thanks everyone for your wisdom.
Posted 7/15/2012 7:14 AM (GMT 0)
Hi Brian:

1. I go to the bathroom 4-6x a day on average. Zero urgency...can hold it for a long time if need be.

2. No more blood. My UC is gone.

3. Your stools will be looser. There is a big difference between diarrhea and lose stools. Diarrhea occurs when you are sick....you wont be sick anymore. My stools now two years post surgery are a toothpaste like consistency. Sometimes they are actually formed. It depends on what I eat.

4. No other health issues other than I'm still anemic. I'm looking I looking into what's going on with that now. Still a mystery.

5. Whole process from beginning to end was 4 months. I had my surgery in two steps. So i had time inbetween to get up and out and do things. It took me a good month to recoup from step 1. Step 2 was very easy for me and I was back to my normal routine 2 weeks later.

6. SO MUCH HAPPIER NOW THAN BEFORE SURGERY! yes I'm shouting that! :)

7. I have a really high pain tolerance so don't go by me. I gave birth to two kids...that pain was worse! I thought the pain was manageable and the hospital I was in was terrific at making sure I was comfortable. Still hurt don't get me wrong.

8. I'm a stay home mom so didn't have an outside job to go to.

Hope this helps. I really love my j pouch....its way better than the poor excuse of a colon I had. Good luck with everything. Let us know how you make out Monday. Sending good vibes your way.
Posted 7/15/2012 1:30 PM (GMT 0)
1. 6-8x per day, I eat mostly fresh fruit, my preferred diet, so my frequency is higher.

2. On occasion, but it's because the blood vessels in the pouch lie closer to the skin. It's not blood caused by UC but by irritation and is completely normal with a jpouch and not nearly in the same quantity.

3. Because my diet is very high in fiber, my stools are mostly formed. You can control this by diet; sugar makes things looser, protein and fiber make things more firm.

4. 11 years out from surgery and I am 100% healthy, have had zero health issues since.

5. I had a 2-step surgery, 8 weeks between steps.

6. ABSOLUTELY! SURGERY GAVE ME MY LIFE BACK!! VERY HAPPY AND NO REGRETS.

7. High pain tolerance here too, was off all pain medication when I left the hospital after 7 days.

8. I went back to my desk job 3 weeks post surgery. Average is 6 weeks.

Consult with a top CR surgeon, one who has a lot of experience. I credit my surgery and my recovery to my outstanding surgeon...he had done over 2000 jpouches by the time I met him.

Sue
Posted 7/15/2012 6:29 PM (GMT 0)
Suebear,
I remember reading that you are very active w/ hiking, etc. Since the colon is responsible for water absorbtion, do you have any issues w/ dehydration while hiking/exercising?
Posted 7/16/2012 2:02 AM (GMT 0)
Brian,
My surgeries were the result of a perforated colon so my answers are not typical. I am almost three weeks out from my ileostomy reversal and loving the j-pouch.

How many times a day do you go to the bathroom now?: 4
How frequently do you see blood?: None
Are your stools hardened or diarrhea?: Mildly formed
Have you had other health issues arise since losing your colon?: Damaged organs caused by the perforated colon acids
How long was the process from first surgery until takedown?: 15 months
Are you happier now than you were before the surgery?: Yes!!!!
How bad was the pain?: The second surgery I had resulted in a loop ostomy that was difficult to take care of so I had less pain than an ulcerative colitis flare but it was not pleasant. The good news is the loop ostomy is a very temporary condition so even during the worst I could see the light at the end of the tunnel. I was shocked at the lack of pain after the second surgery.
Did you miss work/school, if so how much?: I lost my job after the first surgery. I had missed too many days of work.
Posted 7/16/2012 2:57 PM (GMT 0)
Indycat,

Yes, I do long distance thru-hikes in the range of 100-200 miles. To offset dehydration I drink Vitalyte, the best hydration beverage and the only one sold in the Grand Canyon. You can purchase it online at www.vitalyte.com or in REI stores. I am going to try NUUN this week, but I'm worried because it has sorbitol in it and I don't handle fake sugars well. It's not related to my jpouch but just an intolerance of some sort.

Sue
Posted 7/17/2012 12:36 AM (GMT 0)
Sue,
Would you have dehydration problems without taking some kind of hydration beverage or do you just take it to avoid a possibility of dehydration occurring?
Posted 7/17/2012 3:08 AM (GMT 0)
In long distance hiking, I would have dehydration issues, however, so do my coloned long distance hiking friends so it's not just something that affects me when hiking in 10,000ft elevation for 8-9 hours day after day. I drink more electrolytes than my coloned friends but they get dehydrated too.

Going to the gym or hiking for 3-4 hours, I drink only water and am fine.

Sue
Posted 7/17/2012 3:49 PM (GMT 0)
Thanks for the clarification.  Surgery is a real possibility for me and my concern is being able to compete in 5k's.  Since I'm only working about for about an hour a day and running for less than 20 minutes per 5k, I might be able to just take water/gatorade before and after and be fine with my hydration.  I don't like to carry anything but my ipod when running and would not want to carry a water bottle.
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