Surgery for Ulcerative Colitis

ByeByeUC said...

Oh and beatUC if you are reading this: Please stop tossing out that old, tired study that isn't even accurate.

Of course it's accurate, it was a large population based study done by the Mayo clinic, how can you say it's not accurate?
I'll do some research and get more studies posted here. The fact is:"The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."
These are not good numbers for those considering surgery no matter how you try to sugar coat it.

Hey, it's fine that some of you have had great success with surgery, but for God's sake, it's removing a massive body part, not getting a filling in your teeth. And yes, I still believe surgery should be done mainly to save one's life and my GI doc among many others, agrees with me

well suebear when someone says "tear the sucker out". it makes me cringe.
I appreciate your thoughts, and very well put, Thanks

Supersayian you asked about school, I don't know what state you are in and the rule differ. Here a parent has to give permsission for a student to leave, even in high school. As for the college, that would be up to the school, it might be a good idea to wait and start after winter. Then you wouldn't have added stress, the first yeat of college is hard anyway.
You asked about popcorn, I eat it all the time! You can't eat it right after surgery you have to wait a while, but last week I ate a bag for lunch everyday! It can give some people problems, but most of us can eat everything.

Post Edited (summerstorm) : 11/3/2011 7:19:53 PM (GMT-6)

How much did it cost for the surgeries in total? How was recovery, from a scale of 1-10? 10 being easy as pie 1 being the worst

well suebear when someone says said...
ear the sucker out". it makes me cringe."]

Well when you have been through the pain I have been through then that is exactly what you will be saying. Yes, the colon is a major organ, but your body doesn't want it. We don't know why the body is rejecting it, but it is. When you find yourself researching surgery, you know it is time. I am counting down the days, 45! Then I can finally start planning my wedding because I know I won't be sick on my big day =)

I only have to pay a $2500 deductible for my surgeries. Depends on your insurance.

No. I paid $7500 out of pocket with my insurance plan.

     Ironic that I should be reading this post tonight.  My husband and I were just discussing my surgery today!  We were taking a two mile power walk in our neighborhood enjoying this beautiful fall day.

     I was 63 yrs old June 28th of 2010, the day I had a total colectomy with end ileo.  I suffered with ulcerative proctitis for twelve years.   Yes, it was a last resort, yes I was scared to death to have the surgery but I was prednisone dependent, taking 17 - 25 pills daily plus Humira injections because Remicade and 6MP had already failed, and rectal meds.

      There was no worse procrastinator than I.  Suebear can attest to that!  However, you reach a point where you have to weigh the pros and cons of your condition and how you want to live your future.  I just got tired of having such a poor quality of life.  Could not make plans for trips and we are retired.  Port a pots in almost every room in my house because I could not make it to my bathroom and we live in a rancher.  I am so fortunate because I have an extremely supportive husband and wonderful adult daughter who still lives at home.  I could actually see the pain in their eyes as they watched ME suffer.

     I found my surgeon online, as my GI doctor would not refer me to one.  It was the best decision regarding my health that I ever made.  I was not a candidate for j-pouch but I had already convinced myself that living with a "bag" was at least LIVING with quality of life.  Sure it was a tough recovery and I did have a few blips along the way.   On our long walk today I cherished every moment because before my operation I was unable to take those long walks and feel so healthy.  Yeah, my bones are bad from all the darn prednisone I took over the years, but I don't regret having that operation one iota.

     To wrap this up...I don't believe it is so much a life or death decision, but a QUALITY of life decision.

     turnpike.....I would never even consider having that type of surgery here in Jersey.   To be honest, I don't think the surgeons nor hospitals in south Jersey can hold a candle to those in Philly.  Yeah, they are ok for maybe a broken arm, etc..  I was in Virtue Hospital in Voorhees back in 2008, sick as a dog.  The care I received was so incompetent I was certain they were going to carry me out of there in a pine box.

     I had my surgery in Pennsylvania Hospital.  My surgeon was Dr. Robert Fry, head of colorectal surgery at the University of Pa.  He is EXCELLENT!!!  He's been in practice since 1978 and trained at the Cleveland Clinic.  His office is on Spruce and Eighth I believe.  You can do a google search on him online.  Are you considering surgery?  If you do phone his office, tell them Christine Johnston referred you.  His assistant, Mike Fejka, is very nice and contacted me recently to ask if I would speak to one of their patients regarding surgery.  Apparently, this woman is 80 yrs old and scared to death of surgery.  So far she has not phoned me..lol.

     Whatever you decide, the best of luck to you. 

My diagnosis has flipped back and forth between Crohn's and UC over the years ... it's probably Crohn's, but since it's been confined to the colon, my experiences are more similar to UC people than people w/small bowel Crohn's.

I was adamantly opposed to surgery for most of the course of my disease -- I didn't want to lose an original body part, just felt wrong. I was initially opposed to drugs too, thinking I control things w/diet and stress reduction. Well, I couldn't..... at various points I was on asacol, 6 MP, flagyl, remicade, humira, and cimzia.

Last winter I got painful boils all over my butt and hips (a rare skin complication), I had EN nodules all over my legs, I had an eye condition that made it almost impossible to be in the light it was so painful, and to top it off I got a fever that went up to 104.6, while I was on cimzia -- an immune compromising drug. That was the first time I thought I could die of this disease.

Did I have surgery to save my life? Not exactly. Blasting me with vancomyacin and about four other antibiotics got my fever down and prednisone was sort of controlling my gi symptoms. So I wasn't going to die that minute.... but my docs were pretty clear that my only options were surgery or a clinical trial, that prednisone was not a long term option for me (and it didn't even work very well at that point).

Well, a clinical trial, with drugs that were even less safe than the ones I'd been on, and where a 1/3 success rate was considered good, was not something I wanted to do. I still was holding off, until I found out that a substitute had been hired to teach half the semester for me. And then I was clear: I'm done. I want to keep my job more than I want to keep my colon, and I never want to take those horrible drugs again.

Here is the way I framed things for myself, which I believe is the truth and has helped me cope: I tried, and my doctors tried, and we just couldn't help this disease. Maybe we missed something, but I'm done. I'm just done trying things. For most of history and in plenty of places now, people have died of diarrhea, they've died of fevers, they've died of infections. I am so grateful that smart and compassionate people have figured out these surgeries, which can not only make me not dead, but offer me the hope of a good quality of life.

After a few months of healing, I was stunned at how sick I had been.... you just lose perspective..... my quality of life is so much better.

I am one of those people who required a subsequent surgery for a complication from my original surgery (I opted for a permanent ileo, given the crohn's likelihood, and that i was fine w/a bag). I am currently on bed rest from that second surgery, but that's because I have stitches in my butt (this is not a complication that someone w/a j pouch would have), not because I'm sick, and even in this state, my quality of life is so much better -- no urgency, no hours a day in the bathroom, can eat whatever I want, no fevers, more energy, etc.

My surgeon gave me a picture of my colon, which was shocking to me -- I'd seen the insides from scopes, but it looked so much worse from the outside. The transverse part was narrow and scarred, other parts were swollen and looked like raw meat, some parts were black..... it was very hard to imagine that it would ever have gotten better, parts just looked dead.

Surgery is a very big deal, and I would never try to coerce someone into having it. I do not talk about it in a positive way because there is no turning back. I talk with gratitude because I am genuinely grateful. Other people have to make their own decisions, but there's not so much out there to let someone know that there are people living with an ostomy bag who are grateful, and that needs to be in the mix. The people on the ostomy forum gave me hope and support when I was at a very difficult time, and that hope was not false.

That study included people who had surgery as early as 1940. The surgeons are better at it now. My surgery was laparoscopic, which means that I have four tiny scars from it on my belly, size of tic tacs. One complication mentioned in that study is adhesions, and they are much, much less likely with a laparoscopic surgery (making that study an argument for more lapro). Some of the other surgeries mentioned, e.g. stoma revision, are minor, and a heck of a lot less dangerous than say 10 years of TNF blockers or prednisone. That study must have included the first years of doing j pouch surgeries, and surely people have learned from them.....

Decisions w/this disease are a matter of balance -- risks of drugs, risks of continued disease, risks of surgery, etc. I hope better treatments will exist so that people don't have these surgeries anymore, but given that I live in the time I live in, I am grateful for my surgery.

Good luck to those of you who are sick enough to consider this decision, and do come over to the ostomy forum for more specific questions.... no one will pressure you into anything you don't want to do.

Hey guys,  i truly thank for everybody too replying , i  am sorry if i can't reply to u all but there is a lot of replys, so i mean no offense.

I am so glad to hear though  , that you can have popcorn again ,  i haven't had it for so long.  I am taking this thought very seriousily on having the surgery. I will talk to a good surgeon , one my doctor for uc knows, and maybe even my heart doctor might know. Again thanks to all those that reply.

If you think medications will fix your uc and that an ostomy sounds horrible, you are not ready. Don't let anybody talk you into it. But in time you will be ready for "the cure". Took me a few years and I am not sorry I waited until I was at the end of my rope. Sooner would have been a mistake. I have no "I wonder if's". It was my last option. Had my ileo four years ago next tuesday. Tissues were so bad the stitches did not hold and I developed peritonitis. Lived through it. Had surgery for a prolapsed stoma six months later. Few months later stoma was retracted. Surgery did not hold stoma out. I now wear a convex wafer.

After all the problems I still made the right decision. No regrets. If I had not waited until the end of my rope, I might have had second thoughts after the surgery......

After you have a stoma and a pouch the first thing you will notice is that YOU CAN FORGET WHERE ALL THE PUBLIC RESTROOMS ARE!! You won't need them. Next you  will delight at passing the rest areas on the expressway.....and you will reach your destination sooner!! And you will feel good and will want to go places. You will not be scared to go to someone's wedding for fear of a diarrhea attack.

Sounds better than colitis, doesn't it? It is....but you have to be ready.

Dan