One Week until Step One surgery!!

Hi,

Just want to pop my head round and say the best of luck for your op. I am at the point where I feel I am weeks away from deciding to do the same. Like you I feel the prospect of a holiday and no more flare issues/meds seems so much more appealing then a flare which has now gone on over 2.5 years. After 20 years of trying to control this (mostly in remission) i feel like my body just does not want to heal any more.

I am sad that I will have not been able to control this flare but feel .more strongly that life is short and you can not waste it with the horrible things we have to suffer on a daily basis

Please keep us posted on how you get on with timely updates. It helps so much for others who it is right for to make the call.

Imran

Good luck Katie!!

Good luck, Katie! I hope everything goes smoothly!

Anyone who is contemplating surgery PLEASE feel free to e-mail me!
I completely understand needing someone to talk to during that decision time!!

And not all UCers are supportive of the decision so it can be hard to find someone to talk to! :)

Good luck!! Keep us posted!

embersglow1 said...
Anyone who is contemplating surgery PLEASE feel free to e-mail me!
I completely understand needing someone to talk to during that decision time!!

And not all UCers are supportive of the decision so it can be hard to find someone to talk to! :)

I may take you up on this offer. I don't really have anyone to talk to about this. My parents are the only people I really talk to about my UC but they are so sure if I go off all meds and just eat healthier then my body will heal itself. They are horrified at the thought of me having surgery.

Yes! Please email me. Your parents are dumb-heads. But most people are :D

Its so hard when young/younger people get sick... its unexpected and confusing.

I never would have thought id be living without a colon before 30... thats for sure!

Wishing the best for you..good luck

I'm excited for you! It's time you get a chance to be healthy again! Please please PLEASE! Keep us posted. Don't get all fixed up and abandon us!

Hey Katie :)

I don't have time to read through this entire post, but I have to say I'm really happy for you. You have a very high chance of being extremely happy with the results of this.

I've had a couple surgeries (jaw and tonsils), and have to say that I think you'll manage with the process in general even if I haven't gone through colectomy. You'll obviously need time to heal, but our bodies are amazing things and yours will surprise you I'll bet.

Best of luck to you~!

Nude pants as in no pants as in butt naked.

I'm glad you feel comfortable with your decision to have surgery, however I feel any balanced consideration should include a dissenting opinion / experience - that it is possible to beat Colitis without surgery and also have a good idea on whether or not it will work for you within a matter of weeks.

3 years ago I was facing surgery (removal of entire colon and rectum with restorative j-pouch) after 12 years of Ulcerative Colitis that was resistant to all prescribed treatments, diets and supplements that I tried. Even steroids were not working anymore and I had basically lost all hope of anything else working other than surgery. I had accepted my fate and was optimistic about life post surgery.

However some things happened to challenge my decision. Two months before my surgery date my colo-rectal surgeon told me my blood albumin levels were low and so I needed to take meal replacement shakes to bring them up so I would have an ideal recovery from surgery as I also attempted to taper off Prednisone. I was able to successfully taper off Prednisone with something closer to remission for me (no blood.) Perhaps my lack of protein from restrictive diets and chronic inflamation was part of the reason ever prednisone was no longer working. This made me question whether or not surgery really was immediately necessary.

Then three days before my surgery date my Mom handed me a print out of the Wikipeidia entry for Ulcerative Colitis and it mentioned an article by Dr. Borody documenting 6 cases of chronic treatment-resistant Ulcerative Colitis that wre effectively treated using fecal transplants. It seemed too good to be true, however the evidence and the reasoning seemed very clear to me. This gave me hope where I had otherwise given it up. So I decided to postpone surgery just to give this a shot first. It seemed reasonable that mainstream medicine had not yet caught up with available information. The same thing happened with bacteria and peptic stomach ulcers. It took about 15 - 20 years for them to stop removing stomachs even after the information was there. I didn't want to learn 5-10 years from now that my surgery was unnecessary without giving this a try first.

To make a long story short I did the fecal transplant and ended up doing them myself after delays getting a doctor's appointment. Within 6 weeks I had a sudden, full remission of symptoms that I attribute to the fecal transplant enemas and prescription drugs I was taking. Two months later a colonoscopy revealed significant mucosal healing in what had been extensive pan colitis. Three months after that I stopped taking mesalamine (Apriso) and I have been free of colitis ever since with no anti-inflammatory drugs, steroids or restrictive diets. In a word that Dr. Borody's article used, I appear to be cured. So bottom line: even in my very severe case of colitis where my doctors said my colon was too badly damaged to ever recover I had remission by the end of 6 weeks and was drug-free by 5 months after that in December 2011.

Its hard to say at this time whether or not this can work for everyone, however the number of people successfully doing this continues to grow and there are clinical trials going on now as we speak. I can't speak for those who have had surgery, however I would be willing to bet that anyone who believed that there was a viable alternative where they could be well without having surgery, with 1 - 2 bowel movements per day, would prefer this to life post op. However that is just my two cents as someone who took the road less traveled and has been for going on three years now.