To do or not to do the sergery???

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spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 2/3/2009 11:52 AM (GMT -6)   

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. skull

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? idea


Diagnosed with left-sided UC on Sept 08 Colazal 5x2day, Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 supp. every nigh Cortifoam 1 at night
Vitamins: Zinc, B complex, Fleexsead Oil capsules, Multi. Digestive Enzymes (helps a lot)
***I'm not sick with UC, it's UC sick with me!***





Post Edited (spluxa) : 2/3/2009 11:01:31 AM (GMT-7)


Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 2/3/2009 12:34 PM (GMT -6)   
well, I have UC since 12 years and I understand what you're going through. For my part, I am not willing to give up my diseased/affected organ that quickly. There might be a cure for it one day other than surgery and that's why I keep fighting. Besides, I don't know anyone and haven't known anyone EVER (besides childhood) who doesn't have a condition in one way or another and has to take pills. In my opinion, there is hardly such a thing than a 100% healthy person - not for the entire life.

Please don't get me wrong and I am not belittling you, but you don't know what might happen tomorrow in a good way. I have the same thoughts when I am in a flare. I just think it will never end and that's the way it's gonna be for the rest of my life. It is NOT. It will get better, but of course you don't see that when you are flaring which is understandable, because we are truly in pain and suffering.

I will keep my colon as long as possible - until all medication fails or I have displasia and the thingy needs to get out.

Just my 2 cents.
Scarlett, 38 yo., TX
Pancolitis since 3/1997
Meds
6 x Asacol a day
75 50 mg 6-MP
Align (probiotic)
Flintstones Complete Vitamins


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 2/3/2009 12:50 PM (GMT -6)   
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!
Diagnosed with left-sided UC on Sept 08 Colazal 5x2day, Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 supp. every nigh Cortifoam 1 at night
Vitamins: Zinc, B complex, Fleexsead Oil capsules, Multi. Digestive Enzymes (helps a lot)
***I'm not sick with UC, it's UC sick with me!***






subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/3/2009 1:06 PM (GMT -6)   
Many of the harder medications can do more damage than having the colon taken out. Some of the largest side effects are osteoporosis, kidney failure, and cancer. However, I too plan to keep my colon. That's why I have gone to great measures to find alternative treatments, and I'm finding that the alternative treatments are helping me much more than the anti-inflammatory drugs. Of course, alternative treatments don't work for everyone, but there are so many to try: fecal transplantation, Probiotics, vitamin E enemas, diet (avoiding pro-inflammatory foods and anything else that may bother your system, eating anti-inflammatory foods), Omega-3, Boswellia, self-hypnosis, meditation, yoga, massage... Anyway, alternative treatments can reduce the duration and dosage needed even for those who choose to take Prednisone, Remicade, 6-MP,...
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/3/2009 1:11 PM (GMT -6)   
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?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 2/3/2009 1:17 PM (GMT -6)   
Subdued, GI did remove it, the biopsy came back with these resoults. So, she tald me, that when you bleeding all the time there is a great chance to develope cancer...Again, it's just a chance...so I'm trying alternative meds right know...wish me and my poor colon luck :-))
Diagnosed with left-sided UC on Sept 08 Colazal 5x2day, Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 supp. every nigh Cortifoam 1 at night
Vitamins: Zinc, B complex, Fleexsead Oil capsules, Multi. Digestive Enzymes (helps a lot)
***I'm not sick with UC, it's UC sick with me!***






subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/3/2009 1:31 PM (GMT -6)   
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.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/3/2009 1:31 PM (GMT -6)   
It's entirely a personal decision. I opted for surgery because I wanted to live my life medication free; I wanted to travel on my schedule, not my colon's schedule; I wanted to have the freedom to enjoy all foods; I wanted to stay physically active, hiking and backpacking; and I wanted more predictability in my life. UC made my life unpredictable and took away my favorite activities. I didn't want my colon dictating how to live. Surgery gave me back all those items on my list. I am healthy, med free, eat what I want, and travel when I want. I can make commitments and keep them. I can hike all day long, days on end. My life is so much easier sans colon.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 2/3/2009 1:34 PM (GMT -6)   
suebear, how was your recovery period after the sergery? Have you done it in two steps?
Diagnosed with left-sided UC on Sept 08 Colazal 5x2day, Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 supp. every nigh Cortifoam 1 at night
Vitamins: Zinc, B complex, Fleexsead Oil capsules, Multi. Digestive Enzymes (helps a lot)
***I'm not sick with UC, it's UC sick with me!***






suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/3/2009 1:52 PM (GMT -6)   
I had the surgery done in two steps. I went back to work 3 weeks after surgery. A typical recovery is 6 weeks.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 2/3/2009 1:55 PM (GMT -6)   
Thank you Sue, It was nice hearing you point of view too. It so good to know that someone get rid of this UC! ;-))
Diagnosed with left-sided UC on Sept 08 Colazal 5x2day, Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 supp. every nigh Cortifoam 1 at night
Vitamins: Zinc, B complex, Fleexsead Oil capsules, Multi. Digestive Enzymes (helps a lot)
***I'm not sick with UC, it's UC sick with me!***






Chris29
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/3/2009 2:04 PM (GMT -6)   
I'm also in the same situation. I can have my colon removed or stay on meds.
 
Sue, are you totally normal now or do you use the bathroom immediately after you eat. My surgeon can do the internal pouch also. What's it like after surgery?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/3/2009 2:57 PM (GMT -6)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/3/2009 3:19 PM (GMT -6)   
i have a perm ileo, ,after 8 years of fighting with my stupid colon, now i have no idea why i didnt have surgery right away,lol.
I chose it cause i didnt want to try anything else and wait for it to fail, or spend my life on meds for htat, or spend my life in the bathroom
And now i don't i do whatever, whenever!
good luck to everyone, i hope ya'll find something that works for you

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/3/2009 9:43 PM (GMT -6)   
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
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 2/3/2009 10:22 PM (GMT -6)   
Its a really tough decision deciding on whether to have surgery or not. The first time the question was posed to me was about 14 years ago and i thought "no way".
 
Now, I have had the first J-pouch operation and its great not having to worry about where the nearest bathroom is. I am also thinking a bit more clearly and i can plan my life better.
 
My surgeon said to me that the most successful operations were those where the recipient was ready for it. That is, the patient had tried all the treatments that they were prepared to try. As Paul says, you still have lots of medical options available.
 
Some treatments work for some people, but none had worked for me. Another thing to consider is that the newest drugs available are quite powerful and have not been in common and widespread use for very long. The long term side effects of these drugs are not known. As was said earlier in this thread, the medication could be doing more hard to other organs.
 
Good luck with your decision, I hope you make the right one for you for now.
Peter
 
dx 1985
prednisolone 9mg tapering
gave up on meds after infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept
 
have temp ileostomy, reversal probably in Mar/Apr 2009.
 
and I don't know where the nearest toilet is!


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/4/2009 12:20 PM (GMT -6)   
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.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/4/2009 12:54 PM (GMT -6)   
Joy, I know you've had success with that before- do you plan to do it again? It intrigues me a bit, but not enough to give it a whirl. I don't think I could ask my husband to be the donor... I could get it from my 6 year-old daughter. But isn't there a chance of getting some awful bacteris or pathogen or something into your body, causing a massive infection? I have a fistula- if I did this procedure, isn't there a chance the enemas contents could get into the fistula & possible spread thruout the tissues, causing serious issues? I'm still stuck in old-world Western medicine thinking- if it really helps, why does NO ONE in the US practice it? Just seems bizarre- you can get almost anything anywhere these days, ya know?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/4/2009 1:06 PM (GMT -6)   
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. smhair
Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/4/2009 2:19 PM (GMT -6)   
Eva Lou said...
Joy, I know you've had success with that before- do you plan to do it again? It intrigues me a bit, but not enough to give it a whirl. I don't think I could ask my husband to be the donor... I could get it from my 6 year-old daughter. But isn't there a chance of getting some awful bacteris or pathogen or something into your body, causing a massive infection? I have a fistula- if I did this procedure, isn't there a chance the enemas contents could get into the fistula & possible spread thruout the tissues, causing serious issues? I'm still stuck in old-world Western medicine thinking- if it really helps, why does NO ONE in the US practice it? Just seems bizarre- you can get almost anything anywhere these days, ya know?


Hi Eva Lou,

Why does no one in the United States practice it? It's relatively new. The technique was developed in Australia. Apparently, there are some doctors trying it in Canada. I think there are even some testing it in the United States (http://bodyodd.msnbc.msn.com/archive/2008/12/09/1704381.aspx).

Yes. I do plan to do fecal transplantation again if I have another flare or if one of my kids has another baby. I didn't do it with the last flare, because I was able to buy Probiotics. But the Probiotics took longer. The effect from fecal transplantation was immediate.

I get infections all the time--skin infections, bladder infections, ear infections, sinus infections. If I get a cut, the cut gets infected. I didn't even think about the possibility of getting an infection from fecal transplantation though. What kind of awful bacteris or pathogen is a baby going to have? I guess that's the way I perceived it. But you are right; there could be something. I just didn't see it as a risk with my baby granddaughter. The only negatives for me are the grossness in asking for someone's poo and the possibility that it won't work.

There is a way to get the stool and blood tested if you are worried about pathogens. According to MAD (another poster on this forum), you would need to test both the patient and donor for the following:

• BLOOD

A) HIV

B) HEP A IgM, HEP B,C
CMV,EBV,RPR,TOXO

C) FBC,ESR,CLOTTING SCREEN, TSH,
ANA, U&E, CREAT, GLUC, LFT, RhF,
HLA – B 27, RED CELL FOLATE, B12,
ANTIGLIADIN Abs, ENDOMYSIAL Abs, CRP

D) H. PYLORI Abs.

• STOOL

A) CELLS

B) PARASITES

C) CULTURE INCLUDING CL DIFFICILE + TOXIN
YERSINIA, AEROMONAS, KLEBSIELLA OXYTOCA, CAMP JEJUNI, STAPH AUREUS.

ANTI-ADHESIN ANTIBODY TEST FOR E. HISTOLYTICA.


The fissure might be an issue. You might want to ask about that if you ever think of doing it.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/4/2009 3:40 PM (GMT -6)   
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.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/4/2009 7:31 PM (GMT -6)   
Hi Eva Lou,

It made sense to me to use my granddaughter's poo. A baby's poo hasn't gotten messed up from taking antibiotics. A baby has less chance of having any diseases. A baby's poo is a gooey substance (assuming the baby is breastfeeding) and, therefore, easier to use it. And then, there is no embarrassment of asking my granddaughter for her poo.

I have heard that adult poo is more developed. However, baby poo worked for me.

My GI was interested when I told him I did fecal transplantation. But that was as far as it went.

I guess, like my GI, I can't recommend the procedure, because not enough studies have been done. What happens if I do recommend the procedure, and something goes horribly wrong? I can only say that it worked for me and that I'd do it again.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 2/4/2009 10:50 PM (GMT -6)   
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.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/5/2009 12:12 AM (GMT -6)   
The body is used to producing skin. The colon heals during remission. My GI said my recovery after my second flare was remarkable. He said my colon looked like dog meat when he first saw me. Four months later when I had my colonoscopy, it was 98% healed. My second flare had lasted six months.

Of course, the longer you have Colitis, and the longer the duration of your flares, the more damage that is done to the colon and the less time the colon has to heal. I'm hoping that fecal transplantation, Probiotics, and other alternative treatments will help many of us reduce the intensity and duration of our flares as well as increase the time of remission. I would probably still be in remission if it weren't for the fact that I had to go back on antibiotics.

If there were no other alternatives but to take medicines such as Prednisone, 6-MP, Remicade, then yes, I think it would be better to get the surgery now than to harm the body by taking these medicines for many years only to have to opt for surgery later. However, there are other alternative treatments. Should we not try these first?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/5/2009 1:21 AM (GMT -6)   
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.
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