Why would u decide to have surgery and would u avoid heavy duty meds and have surgery instead??

Going for 2nd consultation with surgeon Dr at Cornell in Manhattan. Don't want to go on Remi or Humira bc of side effects.Rectum needs Cortenemas almost every night or i see traces of blood so is surgery best after having UC 32 yrs??? Think so.What do u think??

Are you talking about getting a colostomy? I'd seriously consider it as a last resort but know that it isn't an easy cure either. They can have their own problems.

Yes I've considered surgery.

No, I wouldn't do it before I tried biologics.

I tried Remicaid and I'm on Humira now. The Humira is working and has spared me from surgery (I was in dire straights) and I feel better than I have in a long time because it quiets inflammation throughout my body, not just in my colon.

Without knowing how sick you are it's hard to say what I would do if I was you. But a little blood and having to use enemas sounds like mild to moderate inflammation. I would only consider surgery with severe inflammation. I would try other meds, diet, lifestyle, and supplementation changes first.

i still have no idea with what appears to be a fairly mild and easily managed dose of UC you are still considering the knife - and i'm curious what the surgeon will say -

but ....... if the choice was between a biologic and surgery, i'd go with the knife every time -


how bout this for an answer >

www.healingwell.com/community/default.aspx?f=38&m=3809780

Thanks for all responses.There are a few reasons i think surgery is the right thing for me[both my gastro and surgeon agree with my thinking]. #1- I don't have a spleen from football injury 40 yrs ago[spleen helps immune system].So going on Remi or Humira[i'm on 6mp now] reduces my immunity plus not having spleen and the fact that our immune system gets weaker as we get older[i'm 58] means getting sick[bronchitis,pneumonia etc] is more probable with me if i go on biologics.Also u get pneumonia you will be on heavy dose of anti biotics[been there done that] and it took 7 months to get my colon working after have pneumonia in '08.#2 Glenn Frye from Eagles rock group died bc he had Pneumonia and UC[Died here in N.Y].My gastro said if he had his colon removed before pneumonia he would prob be alive.#3 My rectum prob can not get better [or can it???],i have to do cortenema and rowasa nightly so i don't see bleeding[is this good??].I don't want to have any prolonged bleeding anywhere,can't be good.Also u all and my Dr say prolonged use of Cortenema is not good.My last colonoscopy[june'16] showed a 32yo scared old colon[my Drs words].My DR recommended Remi or Humira in June but he knows my immune system and i told him i would rather not go on them.He agreed surgery is prob a good idea as did surgeon after seeing pics of colonoscopy.So those are my reason,the fact that my rectum won't stop bleeding without med help concerns me[is my UC getting worse??? seems like it.My stools are pretty formed and normal,can i only getting rectum removed[joke].So what do u all think????? thanks again

Anyone who hasn't had surgery would never say "i'd have surgery".

I don't know what I would do. Because i have the perspective of having had surgery, and it's worked out well for me, I am more likely to say, "i'd have surgery". The problem is that, there is no guarantee you will have the same outcome. You could be a 10x a day goer after surgery. Would that be a problem for you? if so, i'd say, avoid surgery.

Your logic is solid, you're not going to get younger, and yes, you could end up without any options in a year or two (or 5 or 10), it's possible when/if that happens, you may not be in a good position to have surgery if your health is less stable due to pneumonia or whatever ailment you may have (but likely won't). there is also the chance that you respond really well to remicade and get into remission that lasts so long that there are other drugs available if something ever happened and it stopped working. it's possible that you never need to consider another drug. it's possible that one infusion every 8 weeks keeps you in a solid remission forever. The other side is, you're 70 and you have no medical options left, and a j-pouch is no longer recommended... and you end up with a perm ileo and a more dangerous surgery at an advanced age.

It's a tough choice and there really isn't any right answer. there isn't even a better answer. you have to weigh the pros and cons. i also had pneumonia and almost died, so i can relate to not wanting to go through it again & wanting to be done with chronic illness - at this time, I feel like I've been successful in removing those things from my life. To me, it was worth it because i had major mental stress from knowing a flare up could happen at any moment. it was like a black cloud that followed me and made me sick & depressed. Some people can handle the idea of flaring every 5 or 10 years without such issue. i personally want to know that I can travel, go to events, see concerts, friends... i don't want to be a slave to the toilet when and if a flare up happens.

I had surgery 3 weeks ago. I only had one day to decide. I'm a 33 year old female. I had a 2cm UC issue for approximately 6 months since July 2016 and started flaring up in mid-January 2017. I only had remicade once and was told that there was no time to wait for the second dose. Even if I had the second dose and it worked, I was told that I would probably need surgery within a year. Doctors did a colonoscopy a day before the surgery and diagnosed me with pancolitis as the entire large intestine was inflamed.

While there was no direct threat to my life, I was at an increased risk of a perforated colon because 50% of the protective mucus layer was gone.

So far, the stoma is working fine and I'm satisfied. They removed my entire large intestine and appendix. They left my rectum in. I'm not looking to get a j-pouch any time soon.

In retrospect, I'm glad that the surgery was done when I was healthy enough to get it done and that I'm now tapering off of the prednisone so that I don't have to take it again or any other medication.

It sounds like your main concern is your immune system. If you're going to constantly be worried about getting pneumonia while on Remicade or Humira even if you have no symptoms, then maybe the surgery is the better option if you're ok with the risks. I was told that there's a 10% chance that my organs may twist in some strange way (to make up for the extra space in my body) and that I might require another surgery. 10% was fine with me.

As I recover, I just have to worry about the surgical wounds healing well, taking care of the skin around the stoma and I'm looking forward to getting back into working and working out in the next couple of weeks. I'm also going to see a therapist for getting back into the dating world. I'm 33, newly single and have no kids.

In my opinion, given your immune system situation and your many years of disease, I think you should seriously consider having the surgery.

I read through your 2nd post quickly and I don't recall seeing what type of surgery. Permanent ileostomy or j pouch?

I tried Remicade before my j pouch surgery but it didn't work. So in my case I wish I skipped it and went right to the OR. I wasted another year of my life. But you just never know.

Everyone who's had surgery will say how great it is, those who haven't will say the opposite. It all boils down to your quality of life before and after. Make sure you do your research and know the risks and what life is like after surgery. There are many, many complications and issues post surgery that you don't hear about from the pro surgery docs. It's a major decision that only you can make, best of luck!

notsosicklygirl said...

NiceCupOfTea said...

notsosicklygirl said...
Some people can handle the idea of flaring every 5 or 10 years without such issue.

For reals!

I'd never have surgery if I only flared up once every 5-10 years. In fact I wouldn't have it if I flared up every year, assuming the flare up only lasted a few weeks.

Of course that's all in the past cos I had surgery quite a while ago. Wouldn't rave about the results personally but I really didn't have much choice.

haha, for me, it was a flare at least every other year, and each flare lasted at least 6 months. The last one was 18 months!!!

I had one gigantic 5 year flare. That was enough for me! Buh bye colon.

1905 its Dr Michelassi i will be seeing.Jane I've had disease 32 yrs i've tried most of everything.Also Jane taking Cortenemas most nights isn't good.It would be j-pouch

He was my surgeon and also Pluot's. He's a great surgeon but if you need hand holding he doesn't have time, he'll tell you that too.

Patients from all over the world come to him, so do doctoral residents. I was there when the new class of doctors came in and I was talking to his residence, they all said that Michelassi was their first choice to study under. He has a surgical procedure named after him.

If you're looking for some help in making a decision on wether to have surgery he probably won't offer you much guidance other than saying that he can do your procedure.

He has lots of resources and they get things done right away since he is the chief surgeon of the hospital.

I spent a lot of time there and he did grow on me after a while, he did some really nice things for me. But I wasn't happy with my initial consultation and the first few days after my 1st surgery. I probably wouldn't have used him after my consultation but my GI told me that he'd use Michalassi for himself and his family, that was good enough for me.

I highly recommend him as a surgeon but if you think that you need a lot of hands on help and a surgeon with a great bedside manner then Michelassi might not be right for you.

In the end I made my decision for the time that I was going to be on the surgery table being operated upon. Everything else was secondary for me.

Jane974 said...


The majority also get pouchitis or inflammation of the pouch and are back on UC meds.

That's not true. The majority do not. Some get pouchitis, treat it with a course of antibiotics and don't get it again for many years, some get it more than others, some get it chronically, but definitely not the majority. If it was the majority, surgery wouldn't be a viable option.