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only 20 but considering surgey!!

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Ulcerative Colitis
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Posted 3/9/2010 12:40 PM (GMT 0)
i am 20 years old and from the age of 15 ive only ever had about 2months of feeling well to me this is a really poor quality of life i feel i have missed out a big chunk of growing up. Ive grown up to quickly i would love to go out with friends and enjoy nights out with them.

Ive reacted to all meds and now think surgey is a good way to go, i know surgey will be on the cards for me later on in life so im just thinking why not get it over and done with now!!!! visiting the doctor tomorrow and will hopefully get referred to a surgon.

does anyone think im making a big mistake??

Posted 3/9/2010 12:46 PM (GMT 0)
If meds haven't worked for you, then I think you're right to consult a surgeon. It doesn't matter if you're 20 or 60. Why prolong suffering?
Posted 3/9/2010 1:04 PM (GMT 0)
hi, im new here, but am pretty much in the same boat as you. i was diagnosed the beginning of last year and have not been in remission once since it started. i will be turning 20 in august this year, and if the latest lot of drugs they are trying me on don't work. then i am def going to be having an operation. ive already missed out on so much of life already in such a short time, miss out on so many things with friends because it just hasn't been realistic for me to participate, i want a better quality of life - and surgery is a sure fire way to get that being the only cure.

just for reference;

meds i've tried:
pretty much all the 5 ASA drugs (salofalk, pentasa , colozide + others cant remember) cant tolerate them, make me worse
imuran, toxic to my liver
methotrexate, had no effect what so ever.
meeds currently on:
prednisolone 50mg ( have been on this dose for over 6 months, and as a result have osteopenia )
Cyclosporine - is an immune suppressant which is meant to work faster then imuran type suppressant, it is making me feel better and things are starting to get back to normal and the doc will hopefully be able to start tapering my steroids soon. however i cant stay on cyclosporine long term either so my GI is gonna start me on 6mp once cyclosporine is fully working.

if not then surgery is pretty much my only option - other then maybe remicade which vie read a bit about here, but not sure what the go is in australia ?
Posted 3/9/2010 1:10 PM (GMT 0)
     I am seriously considering surgery too and I am 63 yrs old.  I have suffered over eleven years with this disease and since March of 08 have had maybe ten months (total) of "feeling well".  I cannot make plans to do anything anymore and don't like this disease  controlling my life.  Yesterday, I had a great day!  That is because I had no bowel movement.  I did tons of chores because I knew today would most likely be a "bad day" and I am right.  So far, and it is only 8 a.m. here, I have gone four times and I know there is more to come.  I still have urgency and cannot make it to the bathroom, therefore, use the port a pot in the family room which is closer.  I can still see blood in the stool.  I have become prednisone dependent and it has given me osteoporosis, raised my blood pressure and blood glucose levels.

     If I were your age and the meds have stopped working...indeed, no doubt in my mind, I would have the surgery.

Posted 3/9/2010 1:12 PM (GMT 0)
hey glad im not the only one going throu all this at such a young age! They want to try me on cyclosporine but ive heard its not a long term drug (which you have just mentioned) so just think surgey is they way forward! Ive tried remicade which in englad is called infliximab i was on that for 3 years but my body got to used to it. x
Posted 3/9/2010 1:18 PM (GMT 0)
I am 28 years old, have had colitis for 16 years this year, and it has well and truly ruined my life up to this point. I am intolerant to all medication, and have been in a major flare since christmas, with chronic pain and bleeding.

I am awaiting my flexible sigmoidoscopy, in 2 weeks, so my consultant can see how bad things are, but i shall be begging her for surgery as i just don't see anyway forward carrying on like i am. I mean i would love to just be normal, with a normal healthy colon, but that is just never going to happen, things have progressively got worse over the years for me, and i am feeling helpless, I cant take drugs, and it has come to the point where i feel like i need medication, so what choice have i got but to have surgery.

I am going to opt for a permanent Ileostomy if i have the choice of surgery, but if my consultant looks up there and says it's not bad enough for surgery i don't know what i am going to do.
Posted 3/9/2010 1:43 PM (GMT 0)
I prob wont opt for permanent surgery just yet i will go for the reversible surgry just to see how it goes.
Posted 3/9/2010 2:21 PM (GMT 0)
shorty-I do not think you are making a mistake. If you have been constantly sick for 5 years this disease is obviously affecting the quality of your life. Since the meds are not working, surgery seems to be a logical step. The only thing I would urge is that you have your doc confirm as much as they can that you do indeed have UC and not Crohn's.

If you are still looking for treatments that don't involve surgery, some fringe treatments for UC include low dose Naltrexone, and intestinal parasites. However, it is your decision and if you think surgery is the best thing for you right now go for it.
Posted 3/9/2010 2:24 PM (GMT 0)
Mercury,

In the US it's not up to the consultant whether or not one opts for surgery; it's up to the patient. I have heard many stories of where the colon doesn't look bad but the patient is miserable. In my own case I had a stubborn area, about the size of a dime that would not respond to treatment. Everything else was fine but that one spot ruined my life so I opted for surgery and never regretted it.

You are never too young or too old for surgery for UC. If you have no quality of life and have exhausted the medical treatments you are willing to try then you can have surgery. For those of you contemplating it would be wise to get ahead of the game and at minimum have a surgical consult.

Sue
Posted 3/9/2010 5:24 PM (GMT 0)
shorty-i didnt get uc until i was 21,and i missed out on alot of fun stuff i should have been doing, clubbing and parties and all that. Now of course i did pletny of that before i turned 21,but i still had years ahead of me for fun stuff.
So, i dont think that 20 is too young, by anymeans. The younger you are when you have surgery the easier the recovery, and the less of life you will miss.
I look back on it now, and im really mad at myself for missing all that. Although i have made up for some of it,lol. But its not as easy to go clubbing andto parties when you have to find a babysitter first! But i still manage, lol

Mercury-like suebear said, its up to you whether you have surgery or not.
Posted 3/9/2010 5:42 PM (GMT 0)
No. I don't think you are making a mistake, especially given that it's very likely you will need surgery at some point. You might as well do it now and enjoy the rest of your life.
Posted 3/9/2010 6:40 PM (GMT 0)
I agree with Subdued, my young child was diagnosed with UC last year. We're going the alternative route at the moment but if necessary I don't think I would be able to subject her to the endless drugs and their potential side effects and would chose surgery sooner than later. Not that I take that option lightly either, it's clearly a major trauma to the body with many potential complications but from what I've read these can be and generally are overcome with time. Good luck!
Posted 3/9/2010 6:55 PM (GMT 0)
I am in a similar situation! 28 and have had IBD for 10 years. It has greatly affected my quality of life and although it never shows up on scopes as anything more than mild inflammation, I have had diarrhea just about the entire 10 years and have run the gamut of meds.

Currently I'm in a horrible flare, on 30mg of pred and going anywhere from 10-20 times a day. I'm miserable. I'd also like a permanent ileostomy but my drs are hesitant becuase of what my scopes show and because I have Crohn's, (although it's always only shown up in my colon) so it's risky since it could return anywhere.

I am at my wit's end and I don't think you're crazy at all for wanting surgery--might as well get it over with and start having control of your life instead of suffering.
Posted 3/9/2010 7:03 PM (GMT 0)

suebear said...
Mercury,

In the US it's not up to the consultant whether or not one opts for surgery; it's up to the patient. I have heard many stories of where the colon doesn't look bad but the patient is miserable. In my own case I had a stubborn area, about the size of a dime that would not respond to treatment. Everything else was fine but that one spot ruined my life so I opted for surgery and never regretted it.

You are never too young or too old for surgery for UC. If you have no quality of life and have exhausted the medical treatments you are willing to try then you can have surgery. For those of you contemplating it would be wise to get ahead of the game and at minimum have a surgical consult.

Sue

Suebear, i am from the UK and unfortunately don't have that choice. My consultant is also my surgeon here! She is really nice, but because i am intolerant to all meds, she isn't sure what to do with me.

Waiting lists are longish here, i have had to wait 6 weeks for a flexible sigmoidoscopy, which is bad when i needed it it straight away, as i am in a really bad flare, and can't treat it with anything! She said she needs to look up there to see what she is dealing with, she told me that i would be hard pushed to find a surgeon, that would operate on me without having looked up there first.

I am just feeling so desperate, my life is ruined, and i just don't know if i am ever going to get it back. Surgery scares me to death, i have never had an operation, and i have never had general anesthetic. I am worried i will end up being allergic to the anesthetic or something as i seem to be intolerant to all medicines, even calcium tablets give me diarrhea!!
Posted 3/9/2010 11:24 PM (GMT 0)
Shorty, not sure what you mean by "the reversible surgery." Once you have your colon out there's really no turning back. That said, it's the only "cure" for UC and if you've been suffering for more than five years it would be a good idea to be done with that. Check out Mark's experience (with lots of photos) at www.j-pouch.net. I am in the middle of my j-pouch surgery experience and while it's been a bit of an ordeal, I have no regrets. I suffered with UC for four years and that was plenty. You have youth on your side for a quick recovery. With UC after about eight years post-diagnosis they want you to have a colonoscopy yearly as your rick of colon cancer goes up -- so basically the longer you have UC the greater your chances of needing the surgery anyway, so doing it now, while you don't have as many responsibilities is definitely not a bad idea.

Consulting a surgeon and discussing your options is a good move.

Hope all goes well for you whatever you decide.

Meesh
Posted 3/10/2010 12:43 AM (GMT 0)
I would opt for surgery in your case as well. Let us know how it goes!
Posted 3/10/2010 1:53 AM (GMT 0)
I really feel bad for you young folks dealing with this disease. I am thankful that I didn't start having symptoms until I was 28 but it's terrible at any age. If I were dealing with this throughout college and high school, I don't know how I would have dealt. I would definitely consider surgery if I were in your shoes. It is the one real cure and since you're young, you will heal faster and better. I may eventually have to opt for surgery as well but I am hoping things turn around. Imagine being med-free and symptom free? That would be a dream.
Posted 3/10/2010 2:07 AM (GMT 0)
I can't imagine what it would have been like had I started experiencing symptoms at a young age as well. Being diagnosed at 30 was bad enough!

Good luck with your decision and with your appointment tomorrow.
Posted 3/11/2010 1:47 AM (GMT 0)
I went to my first local support group last week, and there was as mother there (daughter didn't come) whose 12 year old daughter has had the surgery. Though it's not complication-free, she says her daughter is thrilled. No matter what age you are, this is your life - make it a good one!
What did your doctor say?
Posted 3/11/2010 2:04 AM (GMT 0)
Share your pain- sometimes you just have to understand the past to predict your future. What can you deal with, chat is intolerable. Sounds like you are ready for the next step with no regrets. I personally think it is important to get there yourself--try what can be tried, feel the risk-reward ratios yourself, and then... decide the best surgeon, place and recovery time for YOU.
Good luck, new friend.
Posted 3/11/2010 3:57 PM (GMT 0)
all the best with whatever you end up doing. Going out with friends isn't everything, don't worry about missing out on that.
Posted 3/11/2010 4:44 PM (GMT 0)
i think thats a very important thing. Staying home alone is very depressing. And missing out on all that stuff made me very upset and regret not doing this sooner. HUmans are social creatures, and we need other people in our lives, and friends or some of those who are very important. And being able to go out and have fun with them is something that everyone should be able to do. Letting the disease rule your life and keep you stuck inside will end up with you growing up being bitter over missing all the fun stuff you should have done, and feeling like you need to play catch up.
Ive seen a lot of us who have had surgery feel that way, like we need to cram everysingle minute of fun we can into everyday.
Posted 3/14/2010 6:05 PM (GMT 0)
Hello all shorty here thanks all for your messages lots of help there for me.
Consultant has put me on prednisolne which im to stay on just for about two months to get me out of this state, he has also put me ciclosporin. However i woke up with a rash all over my body had to ring our NHS direct and they think it may be the ciclosporin but got to ring the consultant on monday as im reluctatant to stop the drug so soon as only took it twice but then if you react to somthing theres not alot you can do!! Im also being refered to a surgon so will find out the ins and outs of it then make a decision. Not had a good week have felt rubbish so hope i can sort myself soon.

take care all x
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