To do or not to do the sergery???

Hello everyone!

I know people have to been living wit UC for decades and know how to manage it. I have it for 1 year, and it's already pissing me off. Whole year I've been thinking of it day and night, fighting it, and pretending I'm happy healthy person, so I wouldn't cry everyday how miserable I'm to my closest people. Regular drugs seem not helpful, and as I posted before it is time for Pred. and 6MP. Plus, my vision is getting worse and worse all of the sudden. Anyway, I would fight for every organ to keep it in my body, however, by taking all of these drugs, I'm damaging the other organs.

So, I was wandering, does it make sense to keep THIS ORGAN which makes whole my body sick??? May be it worth to give it up in order to safe the rest of the body? What do you think? Why do you keep fighting this diseases?? People, who did the surgery, how do you feel now?

Scarlett, you are right, I agree with you. What I meant is that while we are fighting with Colon, knowing that even if we will get to remission, it will flare again one day, we damaging the other parts of the body. That's what I'm scarred of. My UC doesn't really bother me...I have no pain no D, most of my symptoms is mild Constipation and blood with mucus. However, since I've got it...I feel that something else is not functioning right :(

P.S. My GI wanted to do surgery right after my first colonoscopy when I was diagnosed. I had an abnormal polyp, which makes it worth because I'm bleeding all the time. So, to prevent cancer I either have to stay in remission or remove this part. I had no remission since then...but not giving up yet!!! :))) And, Yes! I'm hopping that one day it will be a cure there. Just trying to understand what worth what!

spluxa said...
My GI wanted to do surgery right after my first colonoscopy when I was diagnosed. I had an abnormal polyp, which makes it worth because I'm bleeding all the time. So, to prevent cancer I either have to stay in remission or remove this part.

I'm sorry to hear that. Can your GI just remove the polyp?

Hi spluxa,

I wish you and your colon luck. You've had Colitis for only one year now; so there is a good chance that you will find something that works for you and helps your colon. My first two flares lasted six months each. My second flare would have latest much longer if I hadn't done the fecal transplantation. Of course, I was fortunate. It worked for me. But don't give up now. It's only been a year. You might find something that helps your colon and doesn't hurt your body.

suebear, how was your recovery period after the sergery? Have you done it in two steps?

Thank you Sue, It was nice hearing you point of view too. It so good to know that someone get rid of this UC! ;-))

I am not totally normal now, I was not totally normal with UC. I have a new normal. Yes, persistalis usually dictates that you need to empty the pouch after a meal. What you are emptying is from your previous meal. Transit time for me is about 6 hours. However, there is no urgency or pain so I can hold it longer if I choose to. The internal pouch, the k-pouch, is one where you self-catherize. You can meet k-pouchers and jpouchers at www.j-pouch.org Both are good options to living with chronic, drug resistant UC.

Sue

I don’t think you are ready for surgery just yet. It looks like you have tried only a small number of available medications so far. There are still other 5ASA meds to try. Remember that they can take 2 to 4 weeks or more to work. Even though they all contain the same active ingredient, they have different delivery systems and you may find one that works for you. Imuran and 6MP are other options. They can take 6 months or longer to start working. With proper monitoring they can be very safe medications. Remicade is sometimes considered a last resort. It can take several months to determine if it works. If I were you I would try all of these before surgery. In fact I did try all of them and more with no improvement.

If you are thinking of waiting for a cure remember that even if it was found tomorrow it would probably take at least 5 years before it is readily available and even after that it probably wouldn’t work for everyone. Realistically I think it will be more that 10 years before we are even close to a cure. Just think of how many diseases there are cures for, not many. After 8 years of suffering with UC I finally ended up with the first of a 2 part Jpouch surgery on October 20 of last year. I had the second and last surgery only 2 weeks ago. I and still recovering from that surgery. It is still too early for me to say if the surgery was a success.

Your symptoms don’t seem too bad. I averaged 7 to 8 urgent BMs per day with blood on most of them for 3 years strait before I had surgery. With some difficulty I still manage a relatively normal life. Many people that have had surgery report that they felt better almost immediately. These people generally had far worse symptoms. I never felt that way. Surgery was very difficult for me and felt like I was trading one set of problems for another. I can’t tell you which set I prefer. The first surgery I had complications and ended up in the hospital for 22 days. After about 2 months I started to think about going back to work but my surgeon didn’t want me to. All of a sudden my second surgery was scheduled with only 2 days notice because of a cancellation. I have now been off work for 3 ½ months and it will be another month before I go back to work. This is major surgery and requires great consideration before choosing. I expect to take another 6 months or more to fully adjust to the new me. Only you can decide if it is right for you.

Paul L said...
If you are thinking of waiting for a cure remember that even if it was found tomorrow it would probably take at least 5 years before it is readily available and even after that it probably wouldn’t work for everyone.

I think that it's been found--fecal transplantation. It put me immediately into remission. The only reason I got another flare was that I had to be on antibiotics again. As you said, it will be at least five years before it is readily available. I had to do it on my own. And even then, it doesn't work for everyone. But so far the success rates have been high, especially for those who have Pseudomembranous Colitis.

I am reading these posts as I am about to leave to my first consultation with a surgeon. I am soooo nervous. I have tried everything and NOTHING has worked. Even though I have only been diagnosed for over two years, it has been one relentless flare.

I am usually level headed and rational. I am known as being calm - I don't get excited easily, but I got to say, the possibliity of this type of surgery is kicking my butt ( no pun intended).

Oh well--- off I go to see the wizard ( surgeon) at Cleveland Clinic in Ft. lauderdale.

Y'all take care.

It's not that I'm concerned about pathogens necessrily- I just threw that out as a "what if" scenario. If I were to do this, I'd get it from my 6 year-old, & would not test the stool or her blood. I couldn't ask her to go thru a blood sample for that, plus where does one get the lab slips for this? I fear if I asked her doctor to write a lab order he'd think I was a total nut case. My GI would not do it either, I'm 99% sure. My thing is, introducing another person's stool into your body has got to have potential serious complications. And if you're taking immune suppressants already, you're chances of getting something probably go up. Yes, the fistula thing too- sure my own poo goes thru it, but another persons??? Why are you only using newborn poo, aside from the ease of use factor? What about your grown children, or husband/significant other? Looking at what the labs check for, you'd most likely know if someone important in your life was going to test positive for any of those things. It is interesting, theoretically.

I hope that Paul L will return a positive verdict on the surgery in a few months time.

I had J- pouch surgery in September of 2001 in NYC. PaulL is right. It's MAJOR SURGERY! Once you've had it, you understand why the entire colon is removed and not just a part of it. No one should have to endure this more than once. The recovery is actually more difficult than open heart surgery, given that your core is ripped open.

The second part of the surgery is not nearly as traumatic. Your biggest worry is that no blockages form and that the plumbing is clear.

It takes months for the pouch to expand. You're going to feel constant urges to go to the toilet in the first month or so after the surgery. It's not like colitis, however, as you won't get to the point where you cannot contain the urge. In fact, an urge can seem quite immediate and then go away for hours without emptying the pouch. At least that's how it goes for me.

You won't be able to pass gas in public. This will have to be done on a toilet. No more cutting the cheese in anonymity. You cannot have that confidence anymore.

The cure? For the time being, this is the cure. We're lucky the surgery is available. Autoimmune diseases such as UC are a long way from being "cured". They are just too complicated. Active UC is destroying a colon one day at a time, minute by minute. The lining is deteriorating and the colon is narrowing. I was in pretty bad shape as my transverse colon was about as wide as a pencil. The lining was compromised allowing bad bacteria to seep into my bloodstream. This was happening after about ten years of active disease.

If you're having surgery, get the best surgeon available. It's one of the few things in illness you can control.

malachy72 said...
I hope that Paul L will return a positive verdict on the surgery in a few months time.

I had J- pouch surgery in September of 2001 in NYC. PaulL is right. It's MAJOR SURGERY! Once you've had it, you understand why the entire colon is removed and not just a part of it. No one should have to endure this more than once. The recovery is actually more difficult than open heart surgery, given that your core is ripped open.

The second part of the surgery is not nearly as traumatic. Your biggest worry is that no blockages form and that the plumbing is clear.

 

Dear All

I have seen the concern raised by a few of us with regard to the issue as to "whether to go for surgery or not?". Well that is a personal choice. I do agree with what Malachy has written and experienced.

I was detected with UC in October 1989. Thereafter tried all medications, including Chinese, Ayurvedic, Unani, Allopathic, Homoeopathy and other home remedies, including home grown fresh turmeric. Well there were flare ups and remissions. I used to have BMs 30 to 35 times a day and life was painful. But still I could cope up with all the pain. Even tried Vitamin E enema, but by that time it was too late as I was bleeding like hell with over 100 polyps inside me, even though these polyps were being removed every six months. My will power, my meditation, Yoga and self control was giving me strength.

Finally the bleeding could not controlled and I was shifted from one hospital to another in October 2005. The All India Medical Institute also could not control bleeding and I was recommended an urgent surgery, which I agreed. I got surgery done in two stages at another center in New Delhi. However, life became more hellish after that. After first surgery on November 9, 2005, the incision would not heal for months and then all kinds of reactions, food getting stuck in ileo and what not. The stay in hospital was over 40 days in first surgery and than spending almost 4 to 6 hours on dressing in hospital everyday. The pouch adhesive reacted and I had skin inflamation. WEll it was painful and finally the second stage surgery was performed on March 13, 2006 and J pouch became operational. That day and till day I have not been able to live normal life. I have a massive incisional henia on left side and it shows like a pregnant lady. I have a severy horse shoe fistula communicating with my pouch, which is always leaking and painful. Means it is worst that what I was undergoing with UC. Skin infections, anal reactions. I can't eat anything except home made cheese. Everything reacts.

My advice to all of you with UC is please save your colon as long as you can. It is not a simple surgery. It sucks you. I am a professional who was always on the run and active for over 18 hours a day discharging my duties as an corporate attorney. But today this surgery has affected my stamina and a person who was always flying from one city to another and taking 4 flights a day to meet deadlines has been grounded. I feel handicapped.

Well I do not know if anybody has been told about another important after effect of this surgery. The chances of fathering a child become remote. Only a few cases have been reported where people with J pouch could father a child or girls with J pouch could become mothers. It does adversely affect your reproductive system.

Those who are having steroids must have it alongwith Calcium to prevent osteoporaris.

Well please find other options, alternate medicines do help, Meditation, Yoga, Pranayama (yoga) and homeopathy does help. There are bio medicines too. This TSI (sorry they use pig worms) to cure is made in Germany. Try it out. Another very good treatment may be to try Sallaki. I did try and it helps. There is a research on this on Sallaki by German Pharma companies and 80 percent of the people who took sallaki had lesser flare ups than those who were having Sazo. So friends try all options including vitamin E enema recommended by my friend Sheldon. Be calm don't take too much stress. Stress causes flare ups. Please consider the option of home grown fresh turmeric. One can have it first thing in the morning. That is the best healer.

At the end best of luck to all of you. Save Colon.