Ulcerative Colitis Patients/Caregivers: I need your help

I have an idea for a new campaign and I would love your help and input. Just so ya know, emailing me at Marisa.IBD@gmail.com is the best way to reach me and also easier for me to have people’s thoughts and stories in one place.

Please Read The Following Before Proceeding… I know there is a ton of mixed feelings about whether a total colectomy is a cure for ulcerative colitis. I know some patients who have such great luck with their Jpouch or ostomy so they look at surgery as a miracle for them and they do consider themselves cured of the disease. It is not just the public and the CCFA that aren’t sure about using the word cure. I have seen #cured #byecolitis hash tags (along with others along those lines) on twitter and instagram… and probably other social media platforms as well. And some are even from ulcerative colitis patients (who I then see photos and tweets from the ER the following morning.) I want to be very clear that if you have had a total colectomy and have had no issues, I am sooooo unbelievably happy for you.

If you’ve lived with a Jpouch, kock pouch, or ostomy for decades and things have continued to go well, then AWESOME. And I know people who have! But even for those ulcerative colitis patients who DO believe removing your large intestine is a cure, can’t you see how it is not the case for everyone? And wouldn’t a real cure be something that universally eradicates the disease, leaving the person as they were prior to being diagnosed? As opposed to removing a vital organ that can cause a wide range of serious issues which may not seem like a huge deal online but it can be life changing.

I want all of us to be united. Regardless of your personal experiences following your total colectomy, I want us all to acknowledge that this surgery is not a cure for everyone. And if it is not a cure for everyone, and has the possibility to cause even more issues, than there is currently no “cure” for ulcerative colitis. It is a great treatment option and I wouldn’t want my colon back for a second.

So I am really asking all of you to care deeply about your fellow UCers. There are so many out there who are suffering following the removal of their large intestine. There are so many IBDers in and out of the hospital for years, on TPN, having ports and pic lines put in constantly, IV antibiotics for lengthly periods of time, having no quality of life, feeling isolated, relationships impacted, my gosh I could write 12 pages just on this. 

Please, understand that I am in no way trying to shatter anyone’s hopes that this will be or was a life changing surgery. It is for many people. I am simply asking that all of us ban together to let the world know that there is currently NO CURE FOR ULCERATIVE COLITIS.

(Thanks for taking the time to read that )  

So here my idea… As many of you know, I am an ulcerative colitis patient who was diagnosed almost 14 years ago when I was 13. I was never able to truly achieve a period of remission so when I became unresponsive to the last medication, I had surgery to remove my entire large intestine. I was told that the Jpouch that would be created would act like my colon and I would never know the difference… except I will feel better without my diseased organ in me.

I had no idea what I was getting into. I know my situation was more severe than most but it sparked a fire in me recently. I want the word “cure” to be removed from The Crohn’s and Colitis Foundation of America and any other organization that puts it out there. Same with doctors. They should never use the “cure” word in regards to this type of situation.

There is currently no cure for inflammatory bowel disease. There are various treatment options which can vastly improve quality of life (total colectomy being one of them) but there is no true cure.

I would love it if those of you with ulcerative colitis (or who had the surgery while under the impression that you had UC) who have had complications or issues following a total colectomy to email me. My goal is to create some type of book and maybe a little video if I can (I am technologically challenged so who knows) that shows the reality of what many ulcerative patients experience following a total colectomy. I would love it if it could be roughly 1-3 paragraphs explaining what you expected going into the surgery, what happened following the surgery, how your health is now, etc. I am also open to hearing people’s emotional battles as it is just as important, if not more so, than the physical but please do not exceed three paragraphs.

I think including a picture of your choosing would also humanize your story and make the people who will see this understand that we are real people. I want the faces of those suffering to be shown. It can be anything that captures the essence of you. If you could include your first name, age, and where you are from, that would be great too.

I also would love your input about the best way to go about gathering patients/your information. Should I throw three questions out there for you as a guide. Or, do you think it isn’t necessary?

Again, my email is Marisa.IBD@gmail.com. I am looking forward to hearing from you and thank you in advance for your help!

  • http://motorcyclesbooksandfuctose.com Kenzie – Motorcycles, Books & Fructose

    My old GI told me(right after my latest colonoscopy) that the cure for UC was surgery and I flipped out. I told him that isn’t a cure. Just because you take out the colon doesn’t mean you don’t have an autoimmune disorder anymore.

  • http://adventuresofthebaglady.wordpress.com thestomabaglady

    This is an amazing idea – count me in :)

  • gary

    have had a subtotal colectomy in october 2012 feel a hell of a sight better for it,is it a cure?most certainly not still have infection but can at least get on with my life.have an ileostomy which took no time at all to get used to,also have a peristomal hernia,a little uncomfartable but again,feel a hell of a sight better than pre op,
    At the moment waiting for another op to remove the remaining part of the rectum,not unduly concerned about life with an ileostomy,certainly handed me back a better quality of life.

    • http://risaroo86.wordpress.com Marisa Lauren

      I agree in that in can absolutely improve equality of life. And a very good option for those who don’t respond to medications. It’s just the cure word that I take issue with.