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Ulcerative Colitis
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Posted 3/9/2011 9:08 AM (GMT 0)
 I was diagnosed last April with UC, after lialda failed in June my GI put me on Remicade. In August I was put back on prednisone and my next dose of Remi was doubled 10mg/kg. Now my remi seems to stop working after 4-5 weeks, which my GI was concerned about because I am on a higher dose. At that doctors appointment surgery was brought into question again. In January I finally wrapped my mind around the thought of having major surgery and living with a bag for a couple months until undergoing a second surgery and the possibility of decreased infertility. So with this decision I went back to my GI and was referred to a local surgeon as it turns out this surgeon was only board certified as a general surgeon and not a colon and rectal surgeon even though it is his speciality, I didnt feel comfortable with this so I looked for a different surgeon.

Well.. I had my appointment today with a surgeon from Boston, and now I'm scared. I was confident in my decision before I had met with this surgeon, and then he started talking about failure rates, and how he's worried I could possibly have Chrons even though all the tests indicate I have UC. At the time none of the scary stuff he was saying sank in so I went ahead and scheduled my surgery, and now less then 24 hours later I'm worried I'm making the wrong decision. With Remi starting to fail I'm not sure I have other options...

I'm not sure if I need someone to talk me down from being nervous or if my gut is telling me I need to slow down my decisions. Any input is more then welcomed.

Posted 3/9/2011 9:35 AM (GMT 0)
I was d/x back in aug of 2000 with UC and for ten years lived through hell, with every medication (I personally want to shoot the guy who invented prednisone) they could throw at me to try to bring it under control. There were some remissions, but mostly it was just different levels of bad.

Having had a total colectomy with an ileostomy in Oct 2010 was the best decision ever. If you have the surgery, there are options of trying the pouch later on or just sticking with the bag. Personally I don't mind sticking with the bag for awhile because it's brought some normalcy and for the first time in a LONG time I am feeling normal again.

Lots of us have been there when a doctor is telling us he's going to rip us open and remove a large part of us, and it is scary. If you weren't scared, that's what I would be worried about.

You can try to hold out on the meds a bit longer, but if you're at 10 mg/kg of Remicade and/or prendnisone and you're still flaring badly, surgery might very well your best course.

On surgeons? Shop around and ask around. Make sure he is a colo-rectal surgeon. DO NOT SETTLE!!! If after meeting the surgeon you don't feel assured, move on if possible. You are trusting the rest of your life to this person.

Don't worry right now about failure rates, I assume he was talking about pouches. That's to worry about later on. Worry about living right now.

Best of luck, hope this helped.
Posted 3/9/2011 11:36 AM (GMT 0)
Are you flaring at this moment?  Are you willing to try diet modification?

You have a tough decision to make.  My primary concern for you is if you do indeed have Chron's then you may continue to suffer from the disease post-surgery.(fistulas, obstructions, cramping, diarrhea, pouchitis, all the rest of it) 

Posted 3/9/2011 12:55 PM (GMT 0)
If you are uncomfortable with that doctor, get a 2nd, 3rd, 4th opinion until your mind is wrapped around it. There is always complications with any surgery, let alone something so major. But the complications may never happen. I think your fear is very understandable. I also think that it is pretty common to do the whatif's too.....I believe that is one fear all Uc'ers have - What if it's actually Crohn's??? Either way, you have an organ that is not working right.

Have you posted on the Ostomies forum to get their input as well?
Posted 3/9/2011 2:04 PM (GMT 0)
Have you checked out Lahey Clinic in Burlington MA. They have a very good reputation. A co-worker with CD just had surgery there and was very happy with the outcome.
Posted 3/10/2011 4:15 AM (GMT 0)
surgery is so worth it, and so awesome!  and yeah it's scary and yeah there can be complications, but you have to look at it like this, are you miserable now?  do you like your life now? if your answer is no, then surgery can be an answer.  that's what i did i was like, i KNOW i hate my life now, I KNOW I'm missing everything and miserable, and yeah i MIGHT hate having a bag, but everyone i had talked to loved it, and even if i didn't like it at least i would be UC free.

good luck!

Posted 3/10/2011 4:22 AM (GMT 0)
http://www.gastroendonews.com/download/BB1014_WM.pdf
Posted 3/10/2011 8:53 AM (GMT 0)
Thanks for all the input, I'm still not sure what I'm going to do. If I was older the thought of living with a bag wouldn't bother me but at 22 years old I'm not sure I'm quite ready to kiss bikinis goodbye. I am flaring now, it's not that severe right  now, when I started making these appointments it was much worse but I was 2 weeks before my next remi infusion. Going to the bathroom a high number of times a day doesnt bother me as much as the adomenal pain I have, or the fatigue I'm feeling.
Posted 3/10/2011 11:34 AM (GMT 0)
Zoom, I totally understand - I'm also in a bikini a lot :-) Have you tried other medication? Lialda didn't really work for me but I'm doing well on the sulfasalazine entero coated. Have you tried topical medication, too?
Posted 3/10/2011 12:41 PM (GMT 0)
I would feel hestitant too if I was scheduled for surgery and I still had questions.

Why does your GI think you might have Chron's? Why does he feel you should still get surgery even when you might have Chron's? And what is "his" failure rate?

Your health is more important than being able to wear a bikini.
Posted 3/10/2011 3:05 PM (GMT 0)
Have you had the prometheus lab blood work done? It can help to better distinguish between Crohns and UC. Have you tried anything other than Pred, Lialda and Remi? It is a personal decision but I would try rectal meds, another ASA (maybe Apriso), and Imuran before opting for surgery.

Also, when you say you are not in a bad flare now what does that mean to you? I think we all define mild and bad a little differently. Questions I would ask before surgery would be:

Have you been in remission at all since you were diagnosed? Have you tried most medications (oral and rectal)? Have you stayed on the meds long enough to make sure you give them a chance to work? Do you take your meds everyday as prescribed? (I know it is often hard to do that) How is your quality of life affected by this disease? Are you willing to stay on medications for the rest of your life?
Posted 3/10/2011 3:18 PM (GMT 0)
I had the J pouch surgery and I am so excited and happy that I did it. Now having said that, it's very important that you can rule out Crohns in any way if possible. The surgery is really for UC not Crohns. If you do indeed have UC and you are in the hands of a skilled surgeon, the odds are in your favor of having a sucessful outcome. There is a very high success rate...like 95%. Please feel free to ask me any questions...good luck to you.

Marianne
Posted 3/10/2011 9:24 PM (GMT 0)
you don't want to give up wearing a bikini, but do you really feel like going to the beach that much? can you risk going to the beach incase you have to go to the bathroom? can you enjoy time out by the pool? Can you really enjoy the things that you should be?
I was 21 when i got sick, i missed my entire 20's, when i should have been clubbing and going out with my friends and stuff like that, i was in and out of the hospital, too sick to do anything, went to the beach and would stay in the room the whole time. Being on and off pred i got so fat noone would have wanted to see me in a bikini anyway, lol. Then of course, the massive weight gain and loss resulted in stretch marks. I'm not trying to be mean, and i know that you are worrying about more than just wearing a bikini, you are probably worried about all the ways it might change your wardrobe or looks, and that's normal. I am like the most vain person in the world, and i was terffified, i was like, OMG i am gonna have to wear these huge dresses and look like a cow, but i don't. I wear normal clothes, and noone would ever know unless i tell them.
I just don't want to see anyone waste their life on this disease. And i guess since you are the same age as me and i was pretty much in the same place, i really am identifying with you.
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