About Vanessa

Here it goes…

I am 35 years old. For the past 6 years I have suffered from Interstital Cystitis and I was actually going to venture into Stem Cell treatment when my FAP/Colon Cancer diagnoses happened. Over the years ever since I was maybe 22 I had problems that were similar to IBS, I was told that was what I had even when I was never given a colonoscopy. Fast forward to age 35 I decided to finally see a GI since I was suffering from some mild constipation all of a sudden. When the doctor heard I was also anemic and had an Iron Infusion he wanted to perform an upper and lower to see if I had any bleeding polyps, etc. that would be causing my anemia. Sept 23, 20111 I woke up from my colonoscopy with the shocking news I had over 100 polyps and diagnosed with FAP. I am the first one to have this genetic disease so I am the Mutant in my family. I am very glad I tied my tubes at age 29 since this is a horrible disease to pass on to anyone.

When the pathology report came back it said I had “sever dysplasia” and was told to remove my colon asap my clock was ticking that I would have cancer. Well I don’t just let someone take a huge body part out of my body without me understanding my disease and know my options. I went to the top Colorectal surgeons in the US that happen to be in Dallas along with someone who did over 100 Jpouches in his residency at Cleveland Clinic. I didn’t know if the jpouch was for me since I do Crossfit and Olympic Weightlifting and I heard it is very hard to keep things in. So of course the man who did many jpouches said if he opened me up and had desmoids I would be stuck with a permanent Ileostomy. Well that did not fly with me. Even with cancer looming over my head I refused to wear a bag. I later went to the 2nd surgeon and fell in love with him but my Oncologist mentioned I see the 3rd I went to. He made sense, he wanted to look at my colon himself and see what was going on, to him the pathology wasn’t clear and he put having an IRA on the table. He removed the largest polyps that was in my rectum that concerned everyone the most. Turned out that had a T1 tumor in it so I was diagnosed with rectal cancer but my margins were clear. This left me with the only option of having an Ileostomy. I then left for MD Anderson to see if they were doing anything “experimental” for my disease. No and after I was probed for the very LAST time I was over it all and I booked surgery that following week to have the BCIR done. I thank whoever to this day who told me about the Kpouch and BCIR on the Gardner’s Syndrome/FAP Yahoo message board. The most active group I could find.

I found out who my friends were and even met distant family members that helped me out financially that I hardly knew. I got donations for Spa and car payments since I could no longer work in my field as an Art Director/Designer. I went from a 80k salary to zilch. It is scary when faced with the unkown. I am desmoid and cancer free as of December 9th 2011 when my large bowel,rectum and gallbladder came out. My life is rough now, I am still on pain killers, can’t return to work and suffer from depression. Every day is a challenge and sometimes I wonder when it will get better but I hear it does so I hold on to that. I am an Atheist so I never say pray or have faith. Instead I just think positive thoughts and try to smile underneath the pain of having a new pouch and horrible Interstitial Cystitis. Maybe in the long run my bladder will be better without the colon.

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18 thoughts on “About Vanessa

  1. Vanessa,
    I would like to make contact with you. I, too have suffered with IC since childhood. I am 44 and not being given many good options. The thought of stem cell “fixing” came into my mind tonight as I researched the procedure to help a little boy with pulmonary hypertension in our community. When his Caringbridge website listed a link to other sites that had over 100 diseases being helped by stem cell treatments, I was certainly curious. I found your blog while surfing the sites. I can almost hear your voice (even though I don’t know you) when you are commenting on the really sucky parts of this monsterous disease.
    Would you be willing to make contact either through email or by phone?
    I, too, am in the Dallas area and could really use some referrals to some better docs here. I have been bounced around from uro to uro with no compassion and no help.

    I wish you a peaceful night (if possible). I fight the nights and usually fall asleep when totally exhausted. NOT a way of life.

    Please consider contacting me. If nothing else, I could use friend who totally “knows it like it is”. There are no support groups around here for this.

    Did you have your surgery? I will pray for you.

    Ronni Sitar

  2. Hello Vanessa,

    I was doing a search for FAP on twitter and you popped up. I have FAP and I am an art director. Smallish world indeed. Perhaps we can interact and swap FAP stories. I hope things are going wellish for you with your treatments n such. Love to hear from you.

    Take care,

    Todd.

  3. Thank you for your blog!!! I am 99.9 % sure I will have the BCIR done….I had to have a ileostomy back in 2005 after my Crohn’s/Coilits was turning everything into pre-cancer. I thought the ileostomy gave me my life back but now I just was diagnosed with a hernia at underneath my stoma site and needing now, to fix this less than perfect 1969 approach to my health…I so freaking excited at the prospect of not having to wear an external pouch!!!! Again, thank you very much for your blog, videos & pictures and taking us through a very intimate part of your recovery!!! I look forward to reading more of your progress and wish you the best!!!!

    • Very cool! Let me know if and when you have the BCIR done! I think it is easier for people with ileos to have the surgery done. I had my colon, gallbladder, rectum/anus removed and the BCIR created. A lot to go through and was very hard.

  4. Have had my BCIR for 8yrs and would od it again tomorrow. If you cannot have the actual thing working right this is the next best, will talk with anyone about it

    • I opted for the BCIR over jpouch. I was first told I couldn’t have the IRA then no to the jpouch due to a T1 in my rectum but then last minute my BCIR doctor said jpouch could be done even removing the rectum and I just said nope I am here for the BCIR. I want it over in one surgery. I am not waiting for problems with a jpouch or ileo, etc.

  5. Hi Im Tula and live in Australia at the top end and no one knows much here about J Pouchs or FAP. I had FAP in 1978 after my mum got bowel cancer. I had a total colectomy then and all went well for the next 30 years. Then I was told I had a T3 rectal cancer last sept so had a temp ileo until my Jpouch healed and I had the take down 3 weeks ago. What is the difference between BCIR and a J pouch please. i’ve never heard of BCIR and I had a quick look at their website but Im too pooped from lack of sleep and gas pain to read it all now so a short snapshot would be good. I dont want to fall prey to web research which can totally overwhelm me at present when nothing seems to be working and my life seems to be non existant. Thanks

    • Hi Tula! Most people do not know about FAP in general. The jpouch and the BCIR are both made from your small intestine. Jpouch you are hooked up to the anus so it is more “natural” to empty even though I think when I hear people go up to 20 times + a day, that is far from natural. The BCIR is like the Koch Pouch aka Kpouch but has a “living collar” that is made from your small intestine. The small intestine is made into an internal continent reservoir and you empty with a catheter. I normally empty morning and evening or 3 times if I am going to the gym. The stoma is flush with the skin so it is an innie not an outie. If you look at other posts of mine on here I have some photos of how discreet it is. I usually just put a bandage or something over it since slight mucus comes out (not stool since you are continent). Gas is tricky but I take Bently for that and it seems to help a lot. I am still fairly new out. I will be 3 months post op in 9 days.

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