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J Pouch surgery ?'s

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Posted 6/11/2015 1:35 AM (GMT 0)
Hey everyone! I am usually on the Ulcerative colitis forum, but headed here due to recent events.

I had step 1 of 2 part j pouch surgery May 22. My surgeon says if there are no leaks I can have step to in 6 weeks. I have a few questions though.

1. Can I tell if there is a leak? Or do I have to wait to be checked? I honestly will be so upset if this has to be prolonged.

2. I have recently become extremely emotional. I cry all the time. happy, sad, whatever. I cry. Care to share any experiences?

3. How has anyone else done after step 2/3 of their surgery? I am SO fearful that it will be terrible. I am terrified of leaks and accidents. I wasn't really all that sick before my surgery so I feel like it is going to seem terrible. I have been super super sick before, but it has been a while.

4. I am doing ok with my ostomy. It doesn't really bother me to have it. The only problem is I get SUPER anxious about changing it. I'm always afraid something will be wrong with it or something. My skin is starting to become irritated so if you have any tips that would be great. I am honestly not sure what I am afraid of with this, but I get really do get very anxious over the thought of changing my appliance.

Any advice or tips/comments are SO appreciated. Thank you!
Posted 6/11/2015 2:02 AM (GMT 0)
1. No, you cannot tell if there is a leak. A contrast x-ray is needed for this.
2. You might be depressed, it's very common post surgery. If symptoms persist see your regular doctor.
3. There is a learning curve, you will not be perfect after surgery and you need to temper your expectations. Improvement comes in weeks or months, not days. But that shouldn't keep you from going out and being in public or working. It takes time for your new system to learn how to act as a colon. Patience will be a necessity.
4. The loop ostomates is really hard to manage and skin irritations are common. I treated my ostomates like a science project. You don't have to like it.

Sue
Posted 6/11/2015 2:29 AM (GMT 0)
are leaks pretty common, or do most get by ok?
Posted 6/11/2015 3:44 AM (GMT 0)
I had my second and last step on February 16 of this year and am doing great! Like you, I was not that bad right before surgery. I was on prednisone which is why I felt okay beforehand. I was also afraid that it would be worse but it was because the prednisone was tricking me into thinking I was healthy. I am 4 months post takedown and two months ago went to an amusement park and rode all the rides and enjoyed myself with no medications and only about 3 bathroom trips. It was amazing! I still have my moments of pain and cramping since I am only 4 months out, but where I am now I think it is safe to say it was worth it. I also went through some emotional stress in between the 2 surgeries while I had my bag. It was a big struggle for me but I am so happy with where I am now! Not everyone's experience is the same, but I have heard and read about more positives after takedown than negatives. Best of luck to you with your takedown! It's not an easy road but it's worth it!(:
Posted 6/11/2015 11:06 AM (GMT 0)
Thanks for the encouragement and the replies!
Posted 6/11/2015 6:12 PM (GMT 0)
It's totally normal to feel depressed ... my GI put me on anti-depressents before I even had the surgery because chronic illness definitely can leave you feeling low. Talk to your doctor, for sure.

I am almost 2 years out from 3 step surgery. My takedown was July 25, 2013. I had a rough few months - it can be an adjustment. But I work full time, run around with my kids, ride bikes, go to the beach, take long walks, drive long distances - all without issue. That's not to say I don't have bad days. Sometimes food can disagree with my pouch ... but anyone would have that! I don't have accidents, I don't have urgency (I can definitely feel the need to go, but it's not urgent and I can wait if I need to), and I am not on any medication. If that isn't success, I don't know what is!

Good luck!
Alison
Posted 6/11/2015 8:17 PM (GMT 0)
Awesome! I love hearing all of the encouraging success stories!
Posted 6/11/2015 10:29 PM (GMT 0)
Hi Angela!

1. You wouldn't be able to tell if there is a leak. The technicians will see if there is anything like that when you have your "pouch a gram".

2. I cried everyday after my first step of surgery. I thought I was losing my mind! Everything settled back into place after my takedown surgery. The surgeries are such a hard thing on us both physically and mentally. It's totally normal to be weepy. Iif these blues last a long time and you don't feel any better, then it would be a good idea to seek some counseling to get you through.

3. I've had my j pouch 5 yrs this June 25th. It's been amazing! I'm so grateful for this procedure. It's not like having a healthy colon, but it's given me my life back. I never had any leakage or accidents even immediately post op. I use the bathroom about 4x a day. Zero urgency. I can hold it for a really long time if need be.

4. I had those panics too about changing the appliance and the bags. Ugh I hated it. I just had a tough time with my ileo period. Not something I want to do over again that's for sure but that's just me and my experience with it.

Good luck!
Posted 6/17/2015 8:26 PM (GMT 0)
I'm about 6 or 7 weeks post take down. Overall, I'm doing pretty well. It was kind of a trip not having any urgency at all after going so long where whenever I had the urge to go I had to go immediately. I too have am able to hold it as long as I need. I was back to doing pretty much everything I did before a couple weeks after surgery. Except after three weeks, I had pouchitis and a stricture for a few days which made things pretty horrible for about a week, but since then I've been doing fairly well.

If it's any indication, I've been going on 3 hour mountain bike rides at 10,000 ft for the last two weekends and have been going on my normal 5 mile uphill route through the hills from about a week and a half out of the hospital (12 days after surgery) a few times a week and no probs.
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