J-pouch Life

Last night some friends came into town and we went out for a great Italian dinner. We got to talking about how much things have changed, and how I weigh 140 pounds now 5’6″. Just saw my weight, my UC weight was around 120-125. They were saying how they felt bad that while I was so sick and going through the medicine trials, and all the coping to prepare for surgery that they weren’t there more to support us. They said, “we knew you were sick, but were so involved in our own lives.” We just tell them we had tons of support once people really started realizing how sick I was. Megan mentioned that now we and they know that if a friend is sick and not getting better, get in there, ask questions. If you show real interest and they need the support they will respond.

Side Note Pouch Related: Yes, we had wine. Yes, I do drink some with my jpouch. This question is often asked about whether I drink with my pouch or not, just too much will upset me just like anyone!

This time Megan was preparing for a conference presentation at a yearly conference for her work.  At the same time, we were preparing to go and visit the GI, to make the final decision for surgery.  My last chance medicine had failed, Humira, and I was either to live unhealthy and predinsone dependent or agree to the surgery. 

This time this year, we are going to the same conference just one year later. We are going to Mexico for the conference, she is preparing for presentation, and I am going with her. After she is done with work, we are taking a vacation and spending 3 days relaxing on the beach in Mexico. 

How good things have changed!

Photo by:  grantmac

Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedown’ is 2nd surgery).   Step 1 was done in early July 2007 and he was in the hospital for 5 days .  Thankfully, he experienced no complications from this major surgery.   Step 2 surgery will happen after step 1 recovery.   See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal

Mark had Ulcerative Colitis (pan colitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to commit to the surgery.  Many dietary and herbal options were tried as well.  Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets.  It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted.  The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy.  This has been the best decision for his health and quality of life.   Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..

In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency.  Then the related symptoms from those main symptoms were of both physical and emotional in nature.  The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch).  Go to this site here if you want more info:  J-Pouch Illustrated.  And  Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.

Webcast starting on July 28th, Avoid Wrong IBS/IBD Diagnosis offered by the Excellent Resource of Health Talks. 

It happened to me, as it happens to many others – My diagnosis of UC at one time was questioned.  My story is similiar to one of we’ve all heard before;  After a blood test, I had markers of Crohn’s (the infamous and much debated/questioned Prometheus Blood Test). This sparked the worry of “Indeterminate Crohn’s/Colitis diagnosis.”  Which at the time was overwhelming to hear because I was just then considering surgery for the jpouch, and adding this “indeterminate diagnosis” meant I was more likely only able to have the permanent ileostomy. Which of course, is a great option, but at the time, learning what you thought was your disease and isn’t after all, was really hard to absorb.  Turns out after 4 consults later with different GI’s & 1 surgeon regarding the validity of the Prometheus Blood Test in my situation, we decided I fit more the profile of UC and today I am living healthy and happy with my jpouch.

Now, what is so important for many of you out there – is to learn how to understand your diagnosis, especially if it is a new diagnosis or a changed diagnosis.  I haven’t heard this webcast since it isn’t out until July 28, 2008, but I do recommend for you to listen. I have been ONLY PLEASED with the excellent quality of the Healt Talk Webcasts and am shouting to others iwth chronic disease to pay attention to their webcasts.  They are just medical enough to be legitmate, but not so technical I feel like an outsider!

*Please note: We are not saying that the Prometheus Test is good or bad, but for my situation we decided that the findings were of the test were not relevant. The link provided is of other patient opinions, please seek professional advice from medical experts regarding your Prometheus Blood Test. However, if you do happen to get the “indeterminate blood marker” diagnosis, do NOT panic….learn all your facts, seek multiple opinions, know there are other tests do clarify your situation. And note, many of us have had this test done and received scary results that didn’t materialize to be true in the long run.

Photo via:  Mary gaston22