When to consider surgery?

I'm curious.

At what point would you consider surgery to remove your colon as a viable option?

I am starting to realize that it may be a reality for me, but I'm really scared.  I want to consider it only as a last option, but I have heard happy things from people who have had it done, and I'm really tired of being sick all the time.  I've been sick for 7 months straight and this flare just won't end.

What are your thoughts?  When do you call it quits?

For me, after 2 years of being sick all the time, I knew I was ready for surgery when my GI told me he didn't see things getting better with anything he could offer. We did my last colonoscopy and the UC had spread everywhere and was severe, even though I was on Remicade and Prednisone.
I could have probably lived with the bleeding and going to the bathroom a lot, but I couldn't live with the urgency that began causing near daily accidents

yeah, I was on Prednisone for nearly a year and became dependent on it.
I'm even back on 5 mg now even though I had surgery and the endocrinologist told me today I may need to always be on a low dose

For me it was bleeding constantly for 3.5 years - getting brutally anemic, trying every single diet and drug (where I was willing to take the risk) plus the dependency on prednisone. Also - very frequent accidents and not being able to work and enjoy family life. Frankly – I wish I had done it years earlier. Actually - in the end I was scared NOT to get the surgery. It was causing so many issues systemically – including severe tachycardia and races to ER, etc. A real nightmare. I am so thrilled with the results.

Obviously you notice not having a colon - it can for some bring its own issues (like dehydration, butt burn) and there can be issues with the tiny bit of rectum left over (called cuffitis - which is UC in the 2-4 cm that are left, I have this right now) - but for me these are all surmountable and certainly a million (!!!) times better than living with UC. I gather most issues also get much better in time - SueBear is the perfect example :)

I would do it again in a heart beat. No one can believe how healthy I look now - my entire body has calmed down!

I think the satisfaction rate is 90-95%.

Good luck to you.

I'll probably consider it if Remicade or Humira don't work. I might go for a trial drug as well. At this point I have figured out I'm mesalamine intolerant and haven't been able to get below 20mg of pred. I haven't done much in the way of diet modification so I will probably also try an elimination diet as well. Maybe try some herbals, etc. But I have no plans to languish on prednisone for years. I've been on for 3 months now and I'm pretty much over it. I have a lot of side effects and even though it's controlling my UC fairly well, I don't feel good at all... my life is at a stand still.

I had the 1st part of the surgery done last month and am doing well albeit a few minor things, but that was because of my stubborness and lack of following directions ;), looking forward to the next stage of the surgery in a few more weeks. The main reason I did it was because my quality of life was completely comprimised and I exhausted all meds. I think you will know in your heart if you want to get it done. All surgeries are not to be taken lightly but do realize that it has given many people their lives back. Good luck with your decision making and hopefully the 6mp works for you.

Erinkate...I am in the same situation as you...I started this flare about a year ago when i was 20 weeks pregnant with my son who was born in sept. I have been on prednisone on and off now for that year and hospitalized for UC 4 times since then. I am really hoping that i can get this flare under control with out getting surgery but it is always in the back of my head. It will be my last option....right now i am trying everything else. But know you are not alone!!

TP1986 from what I understand it is about 4-8 times daily once you get it under control. But unlike UC, you are able to hold it in, no pain, etc.

Personally I don't care for the added bathroom trips. I'm currently in a flare and I'm going to the bathroom 12+ times a day and 5 a night and I stay in there for almost 15 minutes or more in extreme pain. I'd gladly trade that for a couple times a day with no pain and not sitting in the bathroom for 15 minutes.

Going in for surgery tomorrow. Can't wait to get better cause I'm going to go visit my family in Tennessee this 4th of July and have my Grandma fix some of her country dishes that I love so much(she never uses any grease though so don't have to worry about that).

My 18 yr old son had three major flares. With each one the meds worked less and less and he was becoming sicker and sicker. For him, I really think the turning point was when he no longer felt that his life was under his control. All the drugs that he tried seem to work for a bit and then would fail. He did try Remicade but his body made antibodies against it and he had some pretty serious reactions to it. He, and we, just tired of trying all these things and did not go the humera route. Our GI did not want him using 6mp. Surgery had really been a word that my son would not even mention at the start but he really just got fed up. He was also just finishing high school, somehow got the marks to get accepted to university and we knew that he could defer his admission and take the year off to go through these operations and get his life back.

Yes we were all scared, but we also knew that 95% of people that have these surgeries are happy a year post surgery. There are no drugs that give you statistics like that. I have to say that my son, Dillon, had many complications with the surgery and spent a lot of time in the hospital...BUT...he is now 3 months post his reversal (J pouch working) and is doing GREAT. Even though he had a pretty rough go of it, he absolutely would do it all over in a heart beat.

He is now completely healthy. Every blood test comes back normal, he has more energy than he can remember, can make plans and keep them, is putting on weight, goes to the gym, is getting ready to head of to university in the fall and is living life exactly like a teenager should. He had 4-6 BMs a day, has NO pain and NO urgency, many nights sleeps right through and actually has BMs that are mostly formed ( which amazes me!). Only this last week he came to me all excited and said that he can fart and not be worried about what else might leek out....for him this is huge...it is amazing how what excites us changes!

This is a tough decision that only you and your doctors and family can make...you will now when you are ready. In the mean time spend some time to find the best colorectal surgeon that you can...this is so important.

We wish you all the best and if you have any questions we are happy to share our journey with you.

Cathy ( and Dillon)

I would do it loooooong before you've been considering it. I've had way too good of a run for 21 years on oral and rectal 5ASA meds...If I had to go to anything stronger, I'd opt for the surgery. My mental state and tolerance levels would be fragile to cope with what most of you do. I applaud you all, but life's too short.

q

Thank you so much for the advice. It means a LOT coming from people who've been there.

I think my plan at this point is to see if the 6MP works and maybe try an elimination diet; I haven't really done that and it's worth a shot. BUT, I'm not going to keep living like this, and if it means I have to have surgery to get my life back, well, I guess I'll do it.

I think a lot of my fear comes from the permanence of the surgery. I mean, what if I have the surgery and 3 months later they discover a cure? Then I'm out a colon for the next 40 years.... know what I mean?

There is always the possibility of a cure or advancement, which is the challenge I face as well and why I'm hesitant to rush into surgery.

I do think there is a cure--I think it's inaccurate to claim there's not a cure--we just don't know.  The fact that we do not know what causes the disease makes it all the more mysterious.  Depending on the cause (and there are several theories) the following could turn out to be cures or treatments:

*Just an autoimmune condition.  In that case, stem cell therapy may be an effective cure for "resetting" the immune system to normal function.

*Bacterial cause.  There are over 500 types of bacteria in the human body, so identifying a bacterial agent as the cause of this disease would enable the development of an antibiotic or other treatment mechanism to destroy the agent and restore beneficial flora.  Success with specific strains of probiotics already point to a bacterial cause, as well as limited success with fecal bacteriotherapy in Australia.

Even surgery is becoming more advanced.  Just last week, a hospital in Houston announced laparoscopic colon surgery that requires just ONE small, 1-inch incision near the belly button.  That means quicker recovery, less scarring, and faster healing.

Hence, the dilemma I and several others face and why I want to wait but I don't want to waste more of my life fighting this disease.

________________

CollegeGrad85

24 years old

dx'd with UC 11/2008

Currently flaring.  Not on any medication.  Mesalamines don't work and not willing to go back on Prednisone.

I just got out of surgery, posting on my backflip phone.

Let me tell you other than the surgery pain I can tell that I no longer have UC. So cool!!!!!