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HELP! Being cornered into surgery!

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Ulcerative Colitis
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Posted 12/2/2011 12:52 AM (GMT 0)
i see what you mean. i think that 1) my symptoms are not aggressive enough for surgery because i have a max 3 BMs with urgency. 2) they are not 100% certain i have UC and not chrons and 3) id rather save my colon as much as possible as i believe in alt. therapy, the advancement of medical science and only for emergency situations will i have surgery. im only 18 not worth it for me
Posted 12/2/2011 1:15 AM (GMT 0)
Just wondering, a few of you list pred as a medication. Are you continually on it, or are you in the middle of a taper. Is that why they are recommending surgery, because you can't get off it without a severe flare?
Posted 12/2/2011 3:43 AM (GMT 0)
Other than immuran I never tried any drugs other than the ones the original poster was on, except for colozal for about a week. However it doesn't sound like the symptoms are severe enough and gi's rarley push for surgery. I think another dr may be in order. But getting a surgery consult is never a bad idea! Just so someone knows more about it and what to expect if they do have to go that route, instead of having to do it quickly. A consult doesn't mean you have to do anything!
Hope you get some answers
Posted 12/2/2011 1:53 PM (GMT 0)
I got a surgery consult when I was hospitalized, yes it's always a good idea to gather more information.
But in my case, the surgeon was almost hard-selling me, telling me "you'll be eating hot chicken wings in just a few weeks' (I'm a vegetarian). When I did some research I found that there are many problems after surgery that were omitted in the consult.
It can't be stressed enough that we have to advocate for ourselves and make the best choices with the available information.
For many surgery is the best and final solution, but this case doesn't seem to warrant surgery at this point.
Posted 12/2/2011 2:53 PM (GMT 0)
get a 2nd, 3rd, 4th opinon etc. I bet any Doctor would, be your own advocate. You make your own decisions not them.
Posted 12/2/2011 4:12 PM (GMT 0)
     Wow, I must be the only person here whose GI doctor NEVER suggested surgery.

     Anyway, I was on 6MP for seven years.  It never kept me in a long term remission.  My doctor took me off the 6MP before starting Remicade (which failed after 3rd infusion).  I then gave Humira a shot for three months...no change sad .

     Why is your doctor taking you off Remicade?  Have you built up antibodies to it?

     I agree with most of the posts in here....seek another opinion.

     I felt I exhausted all my options and I did become prednisone dependent for the two years prior to my surgery.  Odd that my GI never mentioned LDN.  I would have tried that had I known people have success on it.  Oh well.

     By the way...I suffered with ulcerative proctitis for twelve years..diagnosed at age 52, surgery at 64.

Posted 12/3/2011 12:59 AM (GMT 0)
The consensus here, as I read it, is to not let these butchers push you down the road to surgery. I am in total agreement. The day may come when you need to seriously consider it, but that day hasn't arrived. There are additional options out there that they don't teach in medical school because it doesn't pay when patients cure themselves. As far as surgery is concerned, it's not the medical profession's funeral if things go wrong or you end up unhappy with the results. As long as they 'followed the book', they are off the hook.

There is a lot of good advice here regarding healthy healing protocols you may wish to follow. From what I've read about or tried myself, I recommend:
(1) Probiotic enemas (anyway you can get good bacteria in you is a good way)
(2) Fecal transplants (yes, this can be done at home and doesn't require an expensive trip)
(3) Acupuncture (a good practitioner can really help with pain and regulating your stool frequency)
(4) Chinese herbal tonics, particularly those that boost and regulate immune system (these are great)
(5) Specific Carbohydrate Diet (this has been a successful diet for many of us)

You sound like you have a good handle on things, so I am sure you will make the right decision for yourself. Just remember, nobody in the medical profession is going to give you full disclosure. They will hit you with what sounds like a good treatment plan when you are sick, in pain, and at your lowest point. Be strong and do the best research you can before opting to go the surgery route.

Best of luck.
Posted 12/3/2011 4:27 AM (GMT 0)
gavin, i wonder why your doctor stopped your remicade. did you notice any improvements or was your bloodwork just really bad? definitely try other methods before surgery. i've noticed doctors are really pushing it these days because they make a ton of money from it and they wanna teach medical residents how to do it. when i was in the hospital, i called the surgery team "the vultures" because they were always breathing down my neck about how my colon "was fried to a crisp and medication would be a waste of time." there's usually always a way to avoid surgery just by changing your diet, medication, lifestyle choices, etc.
Posted 12/3/2011 2:36 PM (GMT 0)
bananagirl the vultures were hovering over me, it was horrible, they kept telling me my colon was my enemy, etc.
I'm still standing, colon & all. I agree with everything you've said :)
Posted 12/3/2011 3:16 PM (GMT 0)
     BeatUC and Bananagirl...During the twelve LONG years I suffered with ulcerative proctitis (all that time, it never entered my colon), not once did my GI doctor have a colorectal surgeon called in consult.  I was hospitalized twice for the disease.  The last hospitalization before surgery was in May of 08.  I was admitted the day of my grandson's First Holy Communion, which I could not attend.  I was in that hospital for eight days and it is a miracle I ever came out alive.  For at least six weeks following, I had horrible pains down into my legs from the ulcerations  in my rectum and could barely walk.  Believe it or not, I went to a colorectal surgeon in my area at that time.  He said if I had surgery it may leave me in worse shape than I was already.

     I suffered for another two years, tried the Remicade and Humira.  Like I mentioned before, my GI never suggested LDN.  I was willing to try ANYTHING.  I was dependent upon prednisone and it was literally killing me.

     I sought out the colorectal surgeon who did operate on me.  He never said that I would be in worse shape following the operation.  He took one look into my rectum and shook his head.  I had to be off the Humira at least six weeks before the operation.  I could not taper off the prednisone and he didn't want me flaring for the operation.  I also had to have a stress echo cardiogram before he would touch me.  I do not consider him a butcher.  I consider him a life saver.   He advised me he would not do a j-pouch because I was too high a risk and let me make the decision.  Wearing a "bag" is no big deal.  I went from taking 17 - 25 pills and rectal enemas down to only taking 1 pill a day and that is for my blood pressure.

Posted 12/3/2011 4:48 PM (GMT 0)
It's a shame some people just don't understand that for some of us there is nothing that diet, drugs, fecal transplants, worms, herbs, fairy dust, ect. is going to do for our UC and that's just the sad truth. Surgery is NOT A BAD THING for those who absolutely NEED it.
Posted 12/3/2011 5:55 PM (GMT 0)
Back in 2000 my son had used up his medical options colon rescue did not work, they would have given him remicade off lable at the time if he wanted it,he elected no more drugs. So he really had no choice surgery or die, he is doing quite well 11 years later with a pouch.
Old Mike
Posted 12/3/2011 6:35 PM (GMT 0)
Sorry but that's just not true about 90% being unhappy! My sister has a jpouch for 20 years now and my uncle has had his for 15 years and they are very happy with their result. That's just in my family. I have a whole group of j pouch friends on facebook who are happy too. Never mind all the people out there with j pouches that I don't know! I am truly sorry for the people who have problems with the j pouch. If I had that many problems I would definately return the the ostomy. Life is too short.
Posted 12/7/2011 4:54 PM (GMT 0)
Bananagirl said:

 "

there's usually always a way to avoid surgery just by changing your diet, medication, lifestyle choices, etc.

REALLY?  "usually always?  "      you make it sound so simple. I sure as hell wish it were

Posted 12/7/2011 5:40 PM (GMT 0)

MustLoveDogs said...
Bananagirl said:
"

there's usually always a way to avoid surgery just by changing your diet, medication, lifestyle choices, etc.





REALLY? "usually always? " you make it sound so simple. I sure as hell wish it were


That's just it. It isn't that cut and dry for some of us who have severe UC. It can't always be fixed with drugs or diet and that's just the way it is. I am grateful every day for the surgery I had. I once viewed it as the worst thing ever and now that I am on the other side of it, it's a blessing....a HUGE blessing!
Posted 12/7/2011 5:45 PM (GMT 0)
I do not believe there there is always a way around surgery. I have seen some people here fight really hard for years and still end up with surgery. If it were as simple as making lifestyle changes, I wouldn't ever flare up. I know I can change my lifestyle, unfortunately, lifestyle changes haven't made any difference in my UC.
Posted 12/7/2011 7:35 PM (GMT 0)
Gavin92-

I get whole psyllium seed by the pound from Frontier. I then grind it myself in a little Mr Coffee grinder. Costs about 7 bucks per pound. If you look on line there are a couple of companies who sell it through Amazon that ship overseas.
Good luck
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