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How does surgery actually "cure" you?

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Posted 10/20/2007 3:02 PM (GMT -8)
This is a genuine question, not trying to be smart or mean or anything.  I know it stops the symptoms, or almost all of them, but how would it actually cure you?  You still don't absorb things right and it seems like you would still be dehydrated.  Don't you still have problems?  Dificiencies (sp)? And do you ever get back to semi solid with a j-pouch (j pouch is the small intestine pouch right?)?  Can you eat raw foods like raw carrots?

I have joined the ranks of the drug resistant (but don't we all get that way eventually?).  When Lialda, asacol, and prednisone didn't work they wanted to take out my colon (while I was heavily drugged).  I told them no, that it was rediculous to make the decision at that time (and of course they kept pushing), but it still seems like it wouldn't solve things.  They also said they really wouldn't do a j-pouch b/c they never work.  What?  People on here say they work all the time.  Of course, she also said "it's just like having your appendix removed".  Um...no.

So my MIL made an appt with a colon specialist in Houston (amazingly in 2 days where it takes me 6w to get one) as opposed to a GI doc and I'm going Monday.  She has a friend who keeps telling her that you go right in, they do this one thing, and you're cured.  I'm like...wouldn't we have heard about something like that????  Duh.  But anyway.  She also thinks they can do gene therapy and I keep telling her I don't think they know which genes do it, but she's convinced (you know MILs).  So I'm sure he'll want to do remicade and imuran, just like everyone else.  I just know they will eventually stop working, so I am trying to figure out what the whole removal of said organ does.

Posted 10/20/2007 5:49 PM (GMT -8)
Surgery was a cure for me.  I had UC for 12 years, 10 of those years in remission on sulfasalazine.  The last 2 years I was severly ill and no amount of enemas, 5ASA drugs, prednisone or 6MP would get me back into remission.  I was taking 23 pills per day, worked full time, and was sick and exhausted.  I had a GI who agreed that I needed surgery but we disagreed on the type.  After tons of research and an honest look at my lifestyle I opted for a j-pouch.

Surgery does not remove your terminal ileum where calories and B-12 are absorbed.  You will not become deficient.  Surgery does not leave you with chronic diarrhea either as some people say.  I have formed movements.  Surgery removes the disease, the discomfort of UC, the cycles of illness and gives the UC sufferer a very good quality of life.  Over 95% of those who opted for j-pouch surgery are satisfied with the results.

There are other surgery options and I would encourage you to research all of them AND be convinced that you are ready to take this step.  Have you exhausted all the medical treatments?  Is your quality of life still good?  This surgery is not like having an appendix removed, this is major surgery, fairly complicated, and has a recovery period of about a year.  However, that is not a year of being displaced from life, I was back at work 3 weeks post surgery, the recovery is more about your new plumbing learning how to behave like a colon.

I would run from any doctor that said this wasn't a good option.  With a j-pouch I have hiked over 200 miles across England, 100 miles in Scotland and 100 miles in Ireland.  I can do anything a person with a colon can do and I would be surprised if anyone knew I was plumbed differently.

Sue

 

Posted 10/20/2007 6:41 PM (GMT -8)
Suebear: Thanks for posting, I too had questions about surgery. My doctor is leaning towards it, seeing as remicade, prednisone, asacol, colozal, and 6mp (so far), seem to be unable to do the trick. I'm 23 so its really hard for me to consider the idea of taking a major organ out of my body when it seems like there could be a cure, or at least a truly effective treatment in my lifetime. I've been flaring for a year and a half now and I'm getting to the point where enough is enough. Trying to finish up a masters is another factor keeping me from wanting the surgery though...but it sounds like the recovery time is much faster than I imagined. I guess I need to do more research. Anyway, I'm glad there are people on this forum who have gone through this and still post after they have had surgery. Thanks again.
Posted 10/20/2007 7:02 PM (GMT -8)
I've had my ileostomy for 31 years due to UC, since I was 10 years old. My ileostomy gave me my life back, no doubt about that one. I was on 21 tablets a day, going to the loo 20+ times a day, was on a very restricted diet, was in pain all the time, basically I had no life!

Since my surgery, I've finished primary and highschool, work full time, travelled the world, ridden elephants and camels, been rock climbing, can eat anything I want (and it shows!), no pain, no meds, etc all without a problem.

As for absorbing nutrients, yes we do. In fact, most people with an ileostomy due to UC tend to find they put on a lot of weight after surgery simply because we are getting the benefits of all our food now rather than having it all washed away in the loo.

I empty my bag between 4 - 6 times a day depending on what I have or haven't eaten (basically just everytime I go and pee so really no extra trips to the loo). There is no urgency either.

Poop with an ileostomy will never be better than a paste like consistency and is often watery. But that's basically because there is no large intestine to absorb the water from the stool. Therefore, ileostomates must drink more water than normal to compensate, but that's a small price to pay for such freedom after surgery.

Ileostomies will 'work' 95% of the time but that's why you wear a bag. You can't feel it working, so you only have to think about it when it's time to empty your bag.

Would I ever go back to my pre-surgery days? No way. Life with an ileostomy is SOOOOOOO much better than life with UC.

Good luck with your decision.
Posted 10/20/2007 7:42 PM (GMT -8)
the easy answer is it "cures" you because it takes the disease out of your body and it goes thrown in the trash! LOL!
anyway, i had a permanent ileostmy in April, and life is great!
i don't have any problems with malnourishment, in fact i absorb things better now. As for being dehudrated, just be careful and drink lots of water, i have only had that problem onc,e and that was a few days after i got hom from the hospital. I do what i want, i eat what i want, i go where i want, no meds, no worrying.
I empty my pouch when i go pee also, and it's usually about 4-6 times a day, depedning on what i eat. Sometimes I can go 6 hours without emptying it, and sometimes it's less. It's kind of pasty, but if you want it thicker there are these geltabs you can put in the bag and they thicken it up. i can eat anything i want, i stay away from seeds and nuts, because the body can not digest those, even a healthy person with a colon, but i could eat them if i wanted. Small seeds like strawberries and such aren't a problem, just like sesame seeds and stuff. Anyway, i think most people with j-pouches can eat most everything also.
i chose to have a perm ilesotomy because i didnt' want the extra surgery with the j-pouch and i didn't want the small chance that the j-pouch could fail. Also, some people with j-pouches have to go alot of times with urgerncy, although that seems to be the minority.
anyway, the day i woke up from the surgery i felt healthier, i felt crappy from the surgery of course, but i just felt stronger. It took a while to recover, but it's so wonderful to be able to do things, like going hiking or shopping.
It's amazing what small things you will be happy about. My mom the other day started crying happy tears over me eating broccoli, which i know sounds stupid, btu i love that and hadn't been able to eat it for the 8 years i was sick, Anyway, if i could do it over, i would have had the surgery the day i got sick!
i worried too that there might be a cure the day after i got the srugery, but then i realized that that might happen, but that most likely it would be a while, and i was just wasting time, i was tired of trying new meds, although i did not try very many, i admit that. I tired remicade, but even when it was workign, i was nervous waiting for it to quit working.
i wish you luck!
Posted 10/20/2007 8:22 PM (GMT -8)
Thanks guys. I haven't tried remicade or imuran (that's 6-mp right?), but like Summer said, I'll just be waiting for them to stop working if they do start working at all. I'm having a lot of trouble letting go and realizing I won't have another baby. I have three so I know, shutup, but when you have a plan in life and it all goes to crap... I just didn't want to go out like this you know? I don't buy into the whole "your body is randomly attacking itself for no reason", I just don't think I have the strength to find that reason anymore (like I said I have three kids...under 4). I don't want to go this route, but I'm sure it will come to it. I just don't know how much more abuse I want to take from the drugs, chances that something else will be happen from taking them.

Sue, I would have to remove the whole colon, they still leave your ileium (ok, it's late, not spelling that right)?

What I don't get is why food moves through us so fast. If it's only our colons, I can see things moving fast through there, but why does it move fast through everything else? What happens so that when the colon is gone it slows down?
Posted 10/20/2007 9:36 PM (GMT -8)
Having your colon and rectom removed is considered a pretty lame cure, although it gets completely rid of the areas that can be infected with disease the things you have to deal with (as you mentioned above) are by no means a completely normal life either but I guess it totally depends on how badly damaged your colon/rectom are from the disease.

:)
Posted 10/21/2007 5:51 AM (GMT -8)
I've heard that even removing your entire colon/rectum doesn't mean a 100% chance of this 'cure'.  Is that true?  Also, from what I've read, you can still get some of the other symptoms of UC that will never disappear. even with the removal of the colon.
Posted 10/21/2007 6:11 AM (GMT -8)
Can I ask what the difference is with a j pouch?  I talked to my doctor recently about surgery and he said he didn't think meds had failed yet, that surgery was very risky and that I would be challenged for the rest of my life.  I realize surgery is a very serious step but I wanted to ask him what he thinks I'm going through now.  Like my life isn't a challenge anyway with the UC?  Thanks so much to those who have had the surgeries for posting.  I've been wondering how people fare who have had the surgery.
Posted 10/21/2007 6:50 AM (GMT -8)

pb4 said...
Having your colon and rectom removed is considered a pretty lame cure, although it gets completely rid of the areas that can be infected with disease the things you have to deal with (as you mentioned above) are by no means a completely normal life either but I guess it totally depends on how badly damaged your colon/rectom are from the disease.

:)

PB

I have to disagree with you about the surgery being a Lame cure comment; with surgery we never have to worry about colon cancer, no more drugs, we can not get c.diff (which in extreme cases can be deadly), no toxic mega colon, any pharmaceutical cure will be manys years away and the drugs will not have a history (so long term you will not know what to expect) and no more c-scopes & Preps.

Sure surgery isn't perfect and any honest surgeon will tell you that you are better off with a HEALTHY COLON than a j-pouch but surgery can give the patient their life back.

--Keith

Posted 10/21/2007 6:59 AM (GMT -8)
I just got out of the hospital last week and while I was there I met with a colon surgeon. He told me that he normally does a 1-step j-pouch Laproscopically for UC patients and told me that he could probably do it for me (you never know until they start the surgery). He said that a healthy colon is better than a j-pouch and with a j-pouch that I should expect 5-7 BMs per day (on average for his patients). He also told me that he wanted me to talk to some of his patients and ones that didn't go as expected not only the ones that went perfectly. His failure rates were a little over 1% total for pouch failure and reproductive issues. Laproscopic 1-steps are rather new but he has done over 700 surgeries. I would also need to stay in the hospital for about 10 days and should expect 3 months to recover from it.

It's a major surgery but over the years they have improved dramatically. You need to find an experienced surgeon.

--Keith
Posted 10/21/2007 7:13 AM (GMT -8)

Surgery was definitely something I never wanted to have and I fought the good fight to avoid.  However, I came to the point where I was more afraid of long term side effects of prednsione and I was done with compromising my ability to participate in life.  I wanted to live again, I wanted to travel, and I wanted to hike.

Yes, food transition is faster.  The reason is that a colon, about 6ft in length, can store up to 48 hours or more of waste.  A j-pouch, all of 9 inches, cannot store that much and that is why frequency is higher.  To empty a j-pouch is a quick and efficient as urinating.  No prolonged periods of sitting on the toilet, no cramping and no pain.

Is this a lame cure?  Not for me.  I am living a full life, not taking any medications, eating a diet high in fresh fruits and vegetables, and exercising to my heart's content.  I can't believe how much better my life is post colon.  Although not as perfect as living with a healthy colon, it sure beats living with severe disease. 

Sue

Posted 10/21/2007 8:35 AM (GMT -8)
Suebear: This may sound strange, and forgive me for asking such a personal question...but how does "going" differ when compared to a normal colon bm? I mean, I understand j-poucher's have to go more than a couple of times a day...but is there urgency? Or do you just feel "full" and you need to go like when a normal colon is ready for a bm, just more often? Thanks.
Posted 10/21/2007 9:09 AM (GMT -8)
Hey ks1905- 10 days in the hospital after lapro surgery? I thought it was 2-3 days in the hospital with the lapro? (of course I know "full"/ total recovery in terms of pouch function can take a year plus), and that the 7-10 days was for open surgery- I may be wrong. Anyway, this is a great thread.
Posted 10/21/2007 9:23 AM (GMT -8)
ks :)

By no means did I mean "lame" to be an insult, I fully understand many are gratefull to have their lives back, so to speak, after having colon/rectal removal, but I'm also aware of many that still find a trade off of issues to deal with because of it as well (I've visited the "Ostomie forum here at HW) ...by "lame" I mean that it's really sad one has to have this done in order to be cured from the disease returning, I do however understand that in many circumstances it's completely necessary (even life or death)...but if it was the greatest thing then docs wouldn't use it as a last resort option either.

:)
Posted 10/21/2007 1:57 PM (GMT -8)
Denise, I'm in Austin as well. I'd be curiou to know the GI Doc you use? I'd like to avoid anyone that tried to force surgery on me and/or said j-pouches don't work!
Posted 10/21/2007 2:48 PM (GMT -8)

There was some urgency right after surgery but it goes away.  The feeling I get now is similar the feeling you get with a colon.  Sometimes you don't even know you have to go, you head to the bathroom to pee and find out you need to empty the pouch too.

Sue

Posted 10/21/2007 7:14 PM (GMT -8)
For those who have had surgery and are happy, God bless you but please present your experience as your experience and nothing more. For those who have had surgery and are unhappy the same (these people exist but are not often seen on this forum).  Just as some meds or alternative treatments work for some and not others surgery also has mixed results, yes you no longer have UC and the cancer risk is gone but as the KS1905 's Doc said a healthy colon is better than a J pouch, so do your research.  The logic of this remark is clear, the question that arises is where the balance shifts. I dare say no one on this forum has a healthy colon (some have no colon) but the degree of disease varies dramatically, thus one reason for my beginning comment. My concern is that I see a lot of very young people both in age and or young in the length of time with UC  looking at, considering or having surgery.  My experience is perhaps of interest.  I basically had mild proctitis when first diagnosed over 20 years ago, this progressed into a bad pan colitis flare that lasted several years. I couldnt tolerate the meds, surgery was suggested by my GI.  My reaction was to change GIs my flare was brought under control, my system adjusted to the meds and though flares have been experienced since (though not as bad as the first) there have been none for the last 4 years. Today the treatment options are many times larger then were available 20 years ago and are growing.  The surgery option will always be there but you have only one colon. I have been very fortunate thus far, I take only sulfasalazine and VSL. Surgery IMO should always be the last option.
Posted 10/22/2007 6:27 AM (GMT -8)
I'm hoping this specialist has some miracle today. Hopefully he'll put me on remicade and it'll work like a dream. I'd MUCH rather have a healthy colon than not have one at all, but I just don't know. I haven't had it very long, but the timing is so bad, and I've always been drug resistant. I know I could have surgery complications that make it worse than now, so I'm not jumping into it. However, I do heal quickly (my c-section was a non-event) and right now I am fairly healthy (though underweight) and still have control over my...muscles? The main problem is, how much of my kids life do I want to miss b/c of this? How many times do I want to say we can't do something b/c mommy is sick. It's not fair to them, and I will feel horrible years from now when I missed so much with them. I have waited 10 years to take my kids to Disneyworld and my oldest will be just under 5 when we go this holiday. I've been waiting since our honeymoon to be able to take them. Right now, if I can get well enough just to get on the plane, I won't be able to even stand in line b/c I'll have to go to the bathroom. Let alone ride anything b/c it would make me have an accident. I'm already crushed that there is no chance of more kids now, let alone this whole trip thing and moving on in life. How many times do I want to say I can't go on a ride b/c I'm sick? How many times do you think I could do that without crying?
Posted 10/22/2007 6:34 AM (GMT -8)

DeniseW said...
I'm having a lot of trouble letting go and realizing I won't have another baby.

Are you thinking you won't be able to have any more children after surgery?  If so, don't worry too much. I know many women who have gone on to have children after surgery for UC. Apparently, it is a little harder to get pregnant after j pouch surgery than ileostomy surgery, but certainly not impossible. The Pregnancy Forum on any ostomy board or on the J Pouch board will attest to that one :)

Good luck with your decision.

Shaz

 

Posted 10/22/2007 7:05 AM (GMT -8)
I am 26, have had colitis (with just a few mnths remission in total) for 7 years and just started exploring surgery. I've tried all the drugs out there except for Humira and worry about the effects of the ones I'm on, like long-term use of Imuran. When I met with the surgeon, she said I could have kids, no problem, with a J-pouch but she pushes for a C-section because there are risks delivery could affect the pouch. Sometimes the baby sits on it and it gets sore, etc. but it sounded like nothing terrible. I still haven't decided what to do, but after 7 years of my young adulthood, and never getting fully into remission, I'm getting close. I just worry about the chance the J-pouch may not work (she won't know 'til she goes in) and I really don't want C-sections. With the J-pouch and three kids that means I'll be cut open five times. I would highly recommend you talk to some of the prospective surgeons' patients - this doctor said I need to do that before I decide. My GI doc said of all the patients she's had who have opted for surgery, just about every one wishes he/she had done it a lot sooner.
Posted 10/22/2007 7:07 AM (GMT -8)
What I always wonder is if they can do transplants for heart, liver, kidney etc etc... Why not the intestines? It'd be nice if we could just get someone's nice healthy colon and be UC free!! :)

I wonder if there is any particular reason this type of surgery would not work?
Posted 10/22/2007 7:12 AM (GMT -8)
Hi Ediekristen

Basically, we can live without a colon which is why money must go into other transplants for organs we can't live without. Also, although our colon is removed, we still have UC in our bodies and it would, more than likely, just come back and affect the new colon :(

They are doing small colon transplants though to varying degrees of success.
Posted 10/22/2007 9:44 AM (GMT -8)
Edie,

They do offer transplants but only of the small intestines.... I just got out of the hospital last Thursday (Mount Sinai in NYC) and I had a roommate while I was there. The surgeon actually offered him a transplant of his small intestines because he only had 6' of intestines left because of blockages and other previous surgeries. He wanted to wait for the transplant because he didn't want to take immunosurpressents.

They do not do Colon transplants because it is not necessary to live, that's exactly what the surgeon said.


--Keith
Posted 10/22/2007 11:52 AM (GMT -8)
A colon transplant will never make sense for a UC patient. You would have to stay on both prednisone and immunosuppressants for life. One of the reasons to have your colon removed for UC is to get off those drugs. As Keith said, you can live a very good life without a colon so it's not going to be an option.

Sue
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