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Why wouldn't you go for surgery!? *rant!!*

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Posted 7/6/2009 8:17 PM (GMT 0)
i think the main problem with the remi and immuran and pregnany is the danger to the baby during the pregnancy. And of course, its dangerous for the mom to flare also. So its a really tough choice to make there.
However any serious illness can reduce your fertitily rate. Just like any stomach surgery, c-sections included.
when i decided to have surgery i already knew i wasnt going to have any more children. But i also knew that even if i wanted more in the shape i was in i wouldnt be able to take care of them anyway. I could barely take care of the 1 i had at that time.
So thats something to look at also.
Posted 7/6/2009 8:52 PM (GMT 0)
Hmm...thing is I have no kids but would absolutely love to in the future, I am absolutely gutted about the fact that there might be a possibility that there would be complications with my fertility. Why does having UC mean fertility could be reduced...and the same for the surgery?! I mean scientifically...what about it could potentially cause fertility problems?!  

Posted 7/6/2009 9:00 PM (GMT 0)
I thought what I read about the surgery mentioned the possibility of scarring which could lead to problems getting pregnant.

The article in the sticky at the top I thought said that while Crohn's can lead to some fertility issues, it didn't seem that UC in itself does, though it can lead to miscarriage. I did have a miscarriage before having my baby. I was in a flare during both pregnancies. Miscarriage is very common, though, so I can't say it was from the UC
Posted 7/6/2009 10:21 PM (GMT 0)
If UC was severly impacting my life for a period of time I would definitely have surgery. Right now I am well managed so I don't consider it an option. Maybe in the future.

I am lucky I've never wanted children. I would be more upset about this illness if I did. For me, life has been hard and a struggle. I know I can't provide a better life for anyone than I was provided and I have gotten no where. I don't see why I would want to raise a child into a life like this. Maybe I am just depressed and haven't met mr. right.

Posted 7/6/2009 11:46 PM (GMT 0)
Frankly, I never had surgery because I never thought it through. That this would go on and on and interfere with my life forever. I never really expected a cure... in fact I fully expected it would shorten my life (and so have lived it to the fullest).

Also, I never had a time in my career where I could say, OK, I'll take a 6 month break right now, and then come back. Never had that opportunity, didn't work in an environment where someone else could just take over for me for a while. Also, was the breadwinner. I know, sometimes you have no choice...but I always had a choice and made it to hang in there.
Posted 7/7/2009 12:04 AM (GMT 0)

I am 69 and would never in my whole life have surgery for anything unless the last resort and without several doctor's opinions!!  Too many die in surgery or have MRSA and die.  I can live with medications, eating good and taking care of myself.  If the day comes it is a life threatening disease for me I will consider surgery - but probably not!

ElaineNY

Posted 7/7/2009 12:17 AM (GMT 0)
If I get cancer in the colon I will have the surgery. If not, I will deal with it just like I have before. The surgery is never inevitable. I have at least 70 more years here, so I imagine something will come out to take care of this in that timeframe.
Posted 7/7/2009 2:03 AM (GMT 0)
peety-most people are only out of work 6-8 weeks, less time if you have a desk job sometimes, possiby longer if you have a super physical job like something that requires alot of heavy lifting.

qwerty-i cant tell you specific scientific reasons as to why UC lessens fertiliy, alot of it is to do moreso with the drugs i think. I think its also a survival of the fittest kind of thing.
Posted 7/7/2009 2:46 AM (GMT 0)

kops2da said...

I am 69 and would never in my whole life have surgery for anything unless the last resort and without several doctor's opinions!!  Too many die in surgery or have MRSA and die.  I can live with medications, eating good and taking care of myself.  If the day comes it is a life threatening disease for me I will consider surgery - but probably not!

ElaineNY

Surgical mortality is less than 1% and affected by severe disease (often left too long), advanced age, and prolonged use of drugs like Imuran, Remicade, and prednisone, among other things.  (And, really, I don't think 69 years old is very old.  Of course, many, many people in my family live well into their active nineties, so perhaps I am biased.)

I look forward to surgery to give me my old life back.  Being invested in being sick is for the birds.  I think I would opt for a permanent ileo and get back to living sooner.


 

Posted 7/7/2009 2:56 AM (GMT 0)

Sheesh, there are many patients who have had successful jpouch surgery in there 60s, 70s, and even 80s!! 

Sue

Posted 7/7/2009 9:29 AM (GMT 0)
Im having surgery within the next month. In fact maybe even next week if the doctor's office didn't misspeak when they left me a message... I've had UC for 4 years and probably about 2 years into it I had my doctor just tell me I could have surgery or be on medications my whole life. Only recently have I accepted surgery. It's taken time to mentally prepare for it. I don't picture it being so bad. 90% success rate with the J-pouch. Probably looking at using the bathroom 5-6 times a day, but that's probably less than I'm going right now and I've heard the bathroom trips are quick and easy anyways. If worst comes to worst I'll just live with a bag. I don't seem to have my shirt off often in public anyways.
Posted 7/7/2009 11:15 AM (GMT 0)

qwerty1 said...
I agree with you Princesa and Zippy123 that it really must be a last resort. And it certainly wouldn't be a decision I enter into lightly. But on the same hand I agree with subdued that the potential side effects from the medications to me are more scary than the actual op.

I think princesa was suggesting that you need not be faced with such limited choices. It is possible for many of us to avoid surgery and potent pharmaceuticals to achieve remission.
Posted 7/7/2009 12:55 PM (GMT 0)
Ickypoo said "It is possible for many of us to avoid surgery and potent pharmaceuticals to achieve remission."

Yes, that's true, but as long as you accept the risk that the "potent" medications do to your body in the long run.  If you go into it with eyes wide open, then don't be shocked when an orthopedic surgeon tells you that you're hip, knee, shoulder, ankle etc joints are destroyed and need replacements...all in the name of avoiding surgery.  Fear keeps people from taking their life back, but even that is a choice. 

Posted 7/7/2009 1:57 PM (GMT 0)
I don't think I have any "fear" of taking my life back; I live each day to the fullest, thank you. I too am in pretty much the same position as Peety, and for many years didn't have anyone to lean on for help after surgery, that's why I opted for Remicade. Also, I've heard of too many complications with surgery and at this point in my life (and yes, my decision) I'm not ready to have that surgery. I will have to have a knee replacement at some point in the next 10 years, but it's not because of meds, just because I've used my knees too much being physical. My husband is on plenty of meds for other problems, and I am only on Remi at this point. So what does he do to avoid the meds he needs to take? We eat well, exercise, etc...my point is that some can survive and want to survive on the meds rather than surgery but it's a very personal choice, and I don't feel like I'm giving up on life because I'm taking Remicade -- I'd like to think I got my life back.
Posted 7/7/2009 2:05 PM (GMT 0)

ickypoo said...

qwerty1 said...
I agree with you Princesa and Zippy123 that it really must be a last resort. And it certainly wouldn't be a decision I enter into lightly. But on the same hand I agree with subdued that the potential side effects from the medications to me are more scary than the actual op.

I think princesa was suggesting that you need not be faced with such limited choices. It is possible for many of us to avoid surgery and potent pharmaceuticals to achieve remission.

Yes, that's what I'm saying. The choices aren't limited to dangerous drugs vs. surgery. In my experience, it is possible to manage the disease through positive lifestyle changes, supplements and dietary modifications. Unfortunately, not many GIs take this approach to treatment, so if a person with UC doesn't do their own extensive research, they may never know there are other options.

Posted 7/7/2009 2:15 PM (GMT 0)

Buckeyeinfl said...
Yes, that's true, but as long as you accept the risk that the "potent" medications do to your body in the long run. If you go into it with eyes wide open, then don't be shocked when an orthopedic surgeon tells you that you're hip, knee, shoulder, ankle etc joints are destroyed and need replacements...all in the name of avoiding surgery. Fear keeps people from taking their life back, but even that is a choice.

I think you misunderstood my point. I was trying to say that it need not be an either/or situation. Of those who can avoid surgery, many can achieve a successful outcome without depending upon powerful drugs like prednisone, 6MP, etc. and risk suffering the kinds of maladies you mention. I think it a false dichotomy to claim that one must either have a colectomy OR be faced with a long term commitment to using potent and potentially damaging drugs. Our options are not necessarily so limited.
Posted 7/7/2009 2:53 PM (GMT 0)
qazwsx12-dont think of a perm ileo as a worst case scenario, its reallly not bad at all, in fact its totally convenient! and with proper placement you could have your shirt off, unless you have on really low riders
Posted 7/7/2009 3:14 PM (GMT 0)
ickypoo, you're right..I did misunderstand, sorry. It's just that this disease is so complicated and people suffer so much...what's good for one may not be the right choice for another...it's very individual. I guess I'm just trying to help by giving another perspective, didn't mean to step on any toes.

Surgery can be the right thing for many people. From what I've seen since my daughter has had the jpouch surgery is that most complications come about through inexperienced surgeons or for those who have indeterminent UC, or for UC patients who were later diagnosed as having Crohn's. If you think you're headed in that direction, seek out a really good surgeon, know that the surgery is not a walk in the park and that recovery can be long, especially if your health has deteriorated before you have surgery. Faith and a positive attitude can help you overcome many of the bumps along the way and a good support network is a Godsend.
Posted 7/7/2009 4:08 PM (GMT 0)
Why wouldn't I have surgery? Well, let's see- I have no D, am able to work every day, go out with my friends & family pretty much anytime, I rarely have accidents anymore, I sleep alright (maybe get up 1-3x depending on what I ate), I have anywhere from 4-6 bm's per day (same as j-pouch), I haven't had to take steroids in well over a year (YAY!). On the flip side, I take high doses of immune suppressants & Remicade, I'm a little freaked out by the potential long-term side effects and/or complications due to the drug use. But I can deal with those. I would go for surgery if I found dysplasia or cancer during a scope, or if I fell into a bad flare again. Until then I don't even think about it much, truthfully. My UC is part of me, I just use the bathroom frequently! My current lifestyle isn't really affected by the UC, so why would I opt for surgery at this point?
Posted 7/7/2009 5:56 PM (GMT 0)
Wow this has become quite a popular topic...I guess its different for everyone, and it comes completely down to personal choice. And from what I've read - it doesn't necessarily have to be a limited choice of surgery or powerful drugs. There are other options to at least try, even if they don't work for every person.

I just think that sometimes when you feel down and fed up about this illness, and especially if you are at the point (like myself) where it is completely interfering with everyday life, then its easy to think there are limited options.

Posted 7/8/2009 1:57 AM (GMT 0)

I hope everyone understood that I was giving MY opinion - how I feel - at my age.  I have a LOT of longevity in my family also - Mom was 92 and Dad 96 -both Grams were 90 when they died.  I just will not take any unnecessary chances that I will not live to be 90!  I like life and I am one of those who diagnosed late - already have hypertension, need two knee replacements and am obese so a lot to consider.

Good luck to everyone!  My rectal meds are doing the job - coming off the prednisone is not fun and I wish I could take it forever!!

ElaineNY

Posted 7/8/2009 3:30 PM (GMT 0)
I don't think there's a need for anyone to apologize. The title of the thread asks for us to express our personal feelings and opinions. It looks to me like everyone's done that respectfully.
Posted 7/8/2009 3:42 PM (GMT 0)
I agree princesa...thankyou everyone for your opinions smilewinkgrin
Posted 7/8/2009 4:43 PM (GMT 0)
Why wouldn't you go for surgery!?

Well I did have surgery. I suffered with UC since October of 2000. I only had 2 flare-ups. The first lasted about 2 years and the second about 3 years until I had surgery on October 20, 2008. I tried all the medications listed in my signature with no help. I even tried 2 clinical trials that didn’t help. I played with diet a little but it didn’t matter what I ate. My symptoms varied from about 4 BMs per day to as much as 15. I averaged about 7 or 8 per day. Every last one was extremely urgent and most had blood. I just ran out of options and my quality of life was not what I wanted to live with for the rest of my life.

When I consulted with the surgeon about surgery she was not pushy at all. She told me it was totally up to me. She also said that based on the fact that I cannot obtain remission I will probably end up having my colon taken out at some time in the future, either because of cancer or my inflammation getting much worse. I was 50 years old at the time and wasn’t getting any younger. I knew surgery was difficult but I didn’t want to wait till I was in my 60’s or 70’s. I decided to have it sooner. I was concerned about the number of BM after surgery possibly being the same as before but I new the urgency wouldn’t be there.

I had my second and last surgery to connect my new J-pouch January 21, 2009 and I finally started to feel better than before surgery about a month ago. I have 4 to 6 BM’s per day with little urgency. I can hold it for an hour or more if I have to. I rarely wake up overnight for a BM. It has been a long hall but I can finally say that surgery was worth it to me.
Posted 7/9/2009 4:19 AM (GMT 0)
I'll tell you what my thoughts were...so many UC and CD patients say after they've had the surgery "Why didn't I do that sooner?!"  And I didn't want to be that person.

The side effects many of you have mentioned I experienced pretty hard core.  I was in 40mg of Prednisone, 4800mg of Asacol and my Remicade was being administered every four weeks just to get me through till surgery.  My immune system was a mess.  I had staph infections, one MRSA that could have killed me (I never knew the severity of it until I was out of the hospital...good thing I made it through!), the infections led to surgery that resulted in open wounds, aka, holes in my bicep, shoulder and heel.  This was something I struggled with for three months straight.  I sweated each time a pimpled would come up on my shoulder or arm.  My body could not fight the simplest form of staph and we all have it!  A runny nose would lead to immediate Mucinex.  The Prednisone had my body so swollen I was miserable.  I'm sure there are other side effects that I've forgotten, but these were my main issues with all the medications that were doing nothing for the UC.

I also opted for my permanent ileo because my surgeon explained that though fertility may be a little more difficult after this surgery, I would be at high risk having a baby with a j-pouch.  He told me that I could miscarry at any time during my pregnancy and there could be complications with the j-pouch that would result in surgery during the pregnancy.  I didn't like what he had to say.  However, I have met people online who have had successful pregnancies with the j-pouch.  But I personally am in love Penelope (my stoma).  She has allowed me to be healthy and never ever go poo again!!!  I could not wait to nix my colon and say 'choa' the bathroom gods of pain! 

I'm five months healthy and very very very happy!  When I first read about the j-pouch I was scared b/c it didn't quite seem like something I would be willing to take the risks for.  I've tried enough things that have failed in this medical UC area, and I would be devestated if the j-pouch didn't work...and I really didn't want to go poo anymore...seriously.  So, summerstorm was the best help ever in my decision b/c we're the same age she loves having an ileo.  I realized that there's a great chance that I would like my ileo too b/c it's the one-time operation that gives me back my life and I never have to look back.  That's what I wanted, and that's what I took.  I took my life back.

smurf  

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