tragic surgery option

Diseases & Conditions Ostomies
1
Hi
 
I am new to the site
 
Despite feeling fine doc's tell me I am not.  have a problem in a tiny area of the large intestine and now surgeons want to remove all of it!!!! Had uc as a teenager but it really settled down and am now 47 and a teacher with one nice bowel movement a day. Imagine my rage at being offered such radical surgery.....I am hoping to plea bargain, but you will all know about negociations with surgeons(-: 
 
So HELP PLEASE what is the real prospect of life after the formation of some sort of internal pouch...do I have any prospect of a return to normality? or is the best thing to do just leave the engine running in a garage after a bottle of booze?
 
blessings
 
Mark
2
Hi Mark.

When you say a "problem" with a small area of your large intestine,are you saying that it is the UC that is back or is it somthing else?
I am sure that the Doctors have there reasons for suggesting surgery but I would find it highly strange if it was because of UC being in a tiny area of bowel,and it isn't even causing you any problems.

I know that having UC for ten years or more does put you at risk of further problems in the bowel,but I would have thought that reguler Colonoscopy's and blood tests would be all that you would need if you are not experiancing any symptoms.

If I was you I would ask the Doctor to explain in more detail exactly what they have found in your bowel and get them to explain to you properly the reasons why they think you should have the whole of your Colon removed.

Please let me assure you that surgery does not mean the end. If I hadn't had my Ileostomy nearly 2 years ago I would never have been able to take a Holiday if it meant flying abroud because I was never well enough with my Uc. This year in June, I had my first plane trip to Menorca and I had a great time. I decided not to go for the J pouch although I could have had that option but that is another story. If you would like to know more then feel free to ask away but please please don't think that that Surgery,and even having a bag like I have is the end. It certainly wasn't for me,it was the beginning.

Sue

3

Thanks Sue

 

It is not a return of uc that is the problem. On a regular two yearly screening a very  small of changed tissue was detected........cancerous or at the last phase before going so...histology was unclear....but it must be removed

My plea will be "please just remove the affected part and then screen me every three months or so".....I am aware of the increased statistical risks of cancer after uc in adolescence......but what is the old phrase "there are lies, darn lies and statistics".......there are exceptions to the rule and I am to be referred to experts as I present as a "rare case". Also, I believe some 30-35,000 people develop cancer of the bowel in the uk each year ( sadly the medical profession can not prevent the death of some `17,000 of these poor souls).......so what I have got may  be coincidental to uc.

I await to hear from the hospital with the experts........but the prospect of the radical surgery with the changes it will bring is a really heavy burden falling in the middle of a really busy year

blessings

Mark

4
So.....I have clarified online my state of health at the present time.....logged on today hoping to hear from some of you out there in virtual land who have dealt with real conditions.......but no luck ......I'll try again some time..

I'm still waiting to hear from the experts at the hospital in London..getting a little anxious as it is now four months since diagnosis

Sue....thanks for sharing your experience

cheers

Mark
5
Hi Mark.

I was hoping that you would get more replies here as well. I was going to recommend another site that I think would be helpful to you but I am not sure if I would be breaking the rules of the board if I was to post it here, could someone let me know if its ok please?

I hope that the news from the experts you are waiting for is what you want to hear.

All the best.

Sue

6

Dear mark

discovered your message today, don't know if you've been back to the hospital or decided what the best option is for your health.

i myself had an ileoanal pouch performed 12 years ago when i was 24, i have familial adenomotous polyposis colei, my life is no different to anyone else's i live life to it's full potential & eat whatever i like, i,ve also never had a day off sick from work due to it.

The early days after my operation i was more cautious about what i ate so as to avoid so many trips to the toilet but it gets better i go approximately 6 times a day & once through the night but i do sometimes get an upset pouch which i control with imodium i've also  have had a few bouts of pouchitis which is treated with antibiotics but not everyone gets this.

My son had his pouch done in june 2003 at 13 years of age, he had it done at the start of the school holidays & was back at the start of term, he was out of hospital in 5 days & to this day his closest friends don't know about it' he doesn't talk about it & has never looked back.

Good luck with whatever you decide to do. tongue