Just over two months out, update!

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run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 6/1/2011 9:41 PM (GMT -6)   
Hello everyone! I'm sorry I've been missing for a couple of weeks, but I've just been feeling so good and got busy doing stuff that time has been getting away from me. I did realize this evening though that I need to make the effort to stay connected to this wonderful community of supportive people. So, I'm back and will make an effort to check in more often.

I just wanted to give a quick update as I just passed the two month mark of having my colon removed (a week ago was 2 months). Some of the things I was stressing about pre-surgery and how they are now:

Pouch care/maintenance/changing/emptying: There are honestly times I forget I am wearing the pouch until it gets "poofy" and I realize I need to empty. I've been out to multiple social events (including a big family wedding!) and never felt awkward or uncomfortable about anything. Changes now are pretty uneventful. I can do the whole thing (including taking a shower) in about half an hour. I feel good about that. I've only lost my seal once so far, and that was due to an experiment with the Adapt ring that didn't go so well. Right now I go about 3 hours or so during the day between emptying and can sleep about 6 hours at night with no issues.

Food!: I carefully followed the soft food diet until my follow up with my surgeon. Then I started gradually adding things back in from the "no" list. I'm now eating: strawberries, cantaloupe, green peppers, onions, lettuce, tomatoes, beans, beer, wine, pop, and lots of other stuff I'm sure I'm forgetting. I'm still too nervous about a few things (like mushrooms!) and I'm not too keen to push the envelope with that kind of stuff since I'm a temp.

Running: I am in my second week of half marathon training. I ran 21 miles in May which thrilled me to no end! I am actually a touch faster than I was when I ended my training cycle in March to go in for surgery. The lack of pain and disease in my body is so freeing! I can't remember a time when I've felt this good and strong. No issues with the pouch at all during any runs so far. I do go through serious fluids and have to drink way more than I ever did before.

Those are the big ones. If anyone going into surgery or just coming out has other questions, I'll be happy to answer them or provide more detail.

I hope you are all well!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/1/2011 10:15 PM (GMT -6)   
YAY!!!!!! great post

hubby is doing really well too
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/2/2011 7:13 AM (GMT -6)   
Glad to hear you're doing so well. I'm doing great too (posted some details a few days ago). I also can't remember when I felt this good, even though I'd still healing from the butt wound and limited on my exercise (well, I can't swim in a pool yet, which is what I love to do most, but I am managing a gentle yoga class, and of course, a lot of walking).

Feeling good is the best reason to be away! Congrats!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 6/2/2011 7:36 AM (GMT -6)   
So good to hear that everything is going so well, Pancakes! I can't believe you are running already! How wonderful!

Things had been rough here until recently. Rachel was finally put on an appetite stimulant which seems to be turning everything around. Why this didn't happen sooner is beyond me but her local doc saved the day last week by prescribing it! She's now eating, gaining strength, starting to gain weight, and beginning short walks once more. open incision is healing well. She just started an online class through her college which will be good for the brain and her friends are home from college so there is a bit of a social life again. Things are trending in the right direction!

Anyway, keep it up! So very happy for you! And yes, do stay in touch here. It's wonderful to hear success stories.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 6/2/2011 8:35 AM (GMT -6)   
So happy to hear Rachel is getting back on track now. Sorry it wasn't acted upon sooner for her and you. I learned something new from your experience. (My sister could have benefitted from that 3-4 months ago.)
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 6/2/2011 8:39 AM (GMT -6)   
I am so happy to hear that Rachel is doing better. I guess it's better late than never, right? At any rate...now that she's able to eat I'm sure her recovery will zip right along. :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 6/2/2011 8:45 AM (GMT -6)   
That's great news! Good luck on your half-marathon.
First step of j-pouch - April 1, 2010
Second Step - 9/21/10
Third Step - 12/14/10

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/2/2011 12:27 PM (GMT -6)   
r4p~that is AWESOME! Where/when are you running your half? It is amazing how feeling well makes a HUGE difference:)

Lynn~YAY glad Rachel is doing better! (((Big hugs)))
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 6/3/2011 1:40 PM (GMT -6)   
lovely post.. what an inspiration you are! great to hear you sounding so positive and training for your half marathon. Which one is it??? This is lovely for me to read... am about to consult my surgeon about a perm ileo - hoping I can get back into my running again too. SO hope I can feel like you do. Good luck with your training.
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 6/3/2011 10:11 PM (GMT -6)   
Wow that is wonderful. Glad to hear you are doing so well. I love hearing these stories. J can't express how he feels.  I can tell by how he acts that surgery helped him.  But when someone that has experienced it says how much better they feel it makes me so happy that J must be feeling the same way. Thanks ! Good luck with your marathon.
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