Surgery questions...

Welcome,
When I was sick with Crohn's, I didn't have the energy to exercise either, but since I had surgery (proctocolectomy and permanent ileostomy), I'm not sick anymore, so I can run, hike, bike, swim, you name it, I can do it!

I run and hike. I would go biking but I don't have a bike. I also workout and go swimming, went rafting last summer, and I've played paintball.

You'll need to keep an eye on if you are hydrated or not.

Yep just like everyone said there is nothing you can't do with a bag. I love my life now with it and do as much as I can unfortunately for me I was diagnosed with RA and suffer terribly with adhesions so any strenuous workout for me is out of the question as my poor old joints can't handle it. But thats nothing to do with the bag, that part is great. I do go swimming whenever I want and do lots of walking but know my limitations. All the best and keep smiling, Life is Good
Doreen

The bag is no barrier to the activities you mentioned, as others said. I had a complication from closing my butt wound, however, that has been a barrier to biking and swimming, at least for a while. Eventually I'll be able to do these things. I'm not a runner, but I could do that now if I wanted to (which I don't, but I do walk a lot).

It's just amazing to have more energy from being healthier. Most of the people here did not have the complication I did.... it happens, but it's much more likely that it won't happen.

BK. the discussion with your surgeon I will enlighten you even more.
I have UC and a lot of people of this forum have also. I am definitely performing better all around in life and work since collectomy. I am not saying that the surgeon removed my colon and I jumped off the table happy as a lark; I lived with a stoma for 12 months and had take-down last week. There were 3 surgeries in all and I've been through and am going through quite a lot. I don't want to downplan what all this surgery means physically. Only that it is temporary, and that afterwards you can go on without the exhaustion and deadly lack of energy that accompanies UC.
If I may make a suggestion; should you definitely decide for the colectomy, try to do so while you are remission because if they operate while you are taking prednisone, it will mean three surgeries instead of two, and a minimum of 9 months instead of a minimum of 3 between the first and last surgeries.

B'Dereh,

Thank you for the heads up. Right now I am in a remission, well somewhat of a remission. The only meds I'm currently taking are Humira, Ranitidine and 6mp. I have been off the prednisone since last december which is nice. I'm not saying that I will be extremely glad when I'm undergoing the procedure. If I do undergo it, there will be a hold up on my travelling and money will be lost on my part unfortunately. However, I must try and keep a positive outlook in my life.

Thanks again

Hi, BK!

I have a j-pouch, but had an ileostomy for about ten months. I am a distance runner, though not at a competitive level. I had my colectomy in March and was able to train through the summer and run a half marathon in October with my ileostomy with no issues. I just had to make sure I paid close attention to hydration and getting electrolytes in. Good luck with your decision.

Just thought I'd mention that if you go for a j pouch you wouldn't be at risk for the complication I mentioned, which comes from having the anus removed and sewn shut. I didn't know you had UC when I wrote that. Some people w/UC opt for the permanent ileo, but it seems like most try the j pouch.

When you talk to the surgeon, you might want to ask about laprascopic vs open incision surgery. I had mine lapro, and I only have 4 tiny scars from it (size of tic tacs). The healing tends to be much faster, and there are fewer risks of adhesions and other internal complications (your surgeon has to be trained in it though, of course).

Another good thing to know is that if you are going ahead w/the surgery, see a stoma nurse before surgery to place where your stoma will go. Bring the clothes you like to wear most often, so you can get it in a place that works for you.

Hope your consult goes well, and feel free to post more questions.

bluegrass has advice that I wish I had been given before my surgery. I had no idea where I wanted to put my stoma before my total colectomy and because of that, they put it align with my hips bones. They thought this would be doing me a favor, but because of my height the stoma is now directly on my pant line (since I am so short) and it is a pretty annoying battle of what clothes to wear.

But these are but microscopic issues for me! What matters is I no longer have severe ulcerative colitis, I can eat whatever I want, I am active and free to go wherever I want to go, and I am not in anymore pain. Yes you may have a bag hanging off of your stomach but that is something you get used to, believe it or not.

Another thought - it might seem easy while you're in remission to think that this surgery is not needed. But there is no cure for UC, except for this surgery. You will eventually need to get rid of it if you want to further your active lifestyle as a runner. Doing the surgery healthy will lead to less complications. I had mine done in 3 surgeries and have opted for the j pouch (which is my final surgery scheduled for late April) and I was very sick at the time of the surgery. But my surgeon told me that 3 surgeries is best since it will give me more time to heal not only from the surgery but from being so sick for so long, and there will be less chance of infection.

I am very happy with my decision to conquer this, and like B'Dereh said, this is not a quick fix! You have to be strong and ambitious undergoing these surgeries, which I'm sure you will have no problem with. Trust me, these surgery recoveries are a joke looking back on it after comparing it to the last 15 years that I had flaring ulcerative colitis. I'm only 22 and have learned so much about myself through these surgeries. I wish the best for you!!

You might get more feedback on your surgeon if you ask the question at www.j-pouch.org

Sue

Runnerman, I came across your post when I was looking up Dr. Cataldo and j pouch surgery. I had seen him a while ago when I first started having UC symptoms (not sure why I was referred to him), but then started seeing a GI at Fletcher Allen when I was finally diagnosed with UC. I am going to be asking for a surgery consult When I see my GI in a couple of weeks. Did you end up having surgery with Dr. Cataldo? Would love to hear about your experiences since it sounds like we are in the same general area.