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Doc recommending surgery - not ready to give up!

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Ulcerative Colitis
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Posted 3/18/2011 4:30 PM (GMT 0)

My husband has been diag with UC since Oct 2009.  He has taken Asacol, Immuran, Cimzia, Prednisone, & Remicaid.  Pred always helped his UC but caused other problems.  The last time he took it he was on 40 mg & went bezerk.  Can no longer tolerate it.  Nothing else helped until Remicaid.  Wonder drug! After the 1st dose, he was 95% better.  However, during the 3rd dose this past Tue, his bp bottomed out.  Doctor's office sent him to ER and kept him overnight.  Doctor there thinks it was due to dehydration caused by a flare up rather than reaction to Remi.  We tend to agree since this has happend to him before without taking Remi.  Now his GI Doc wants to refer him to a surgeon.  Doc doesn't want to try Remi again.  Surgery scares my husband & me to death! We want to try Remi again.  He was so much better on it.  Thinking about looking for another doctor.  Would love to have your opinions & comments.  Can anyone recommend anyone in Alabama or surrounding area?

Posted 3/18/2011 4:45 PM (GMT 0)
Personally, I'd go for surgery. Scary as it seems, it will give your husband his life back. I opted for surgery 10 years ago after exhausting all medical options. Remicade was not available then and I'm grateful for that. One less toxic drug to potentially deal with later in life. And I've had the best last 10 years of my life! No meds, no flares, no UC diets, no travel or health restrictions.

You can also ask to try Humira which is similar to Remicade. This might buy you time to research surgical options and consult with a surgeon. I do recommend you consult with a surgeon now in the event you need to schedule surgery at some point. It's always best to know what you're up against for the future.

Sue
Posted 3/18/2011 4:58 PM (GMT 0)
I'd personally never get to the point of trying meds in desperation, especially with extreme side effects or having continual flares.

I would welcome the surgery....absolutely the truth. I've been spoiled with 22 years worth of medications that work for me. Even the slightest flare has me treating immediately and expectations of improvement have been 100%.

I think it's better to know what's inevitable....

Your husband has been through so much....I hope he finds resolve through research and the decision-making process. I think it's better to go forth with intent than be forced into a corner. Although, it's a painful process getting there.

Welcome to the forum...maybe check out the ostomies forum as well for additional support.

Please let us know how he's doing.

quincy
Posted 3/18/2011 5:00 PM (GMT 0)
I don't think surgery is giving up, most people who have surgery do end up with a much higher quality of life after but at the same time, I understand your fears.

There are some treatment options available that you may not have heard about:
https://www.healingwell.com/community/default.aspx?f=38&m=1666318

read through that thread, towards the bottom we posted a link with alternative/traditional treatments that are available. have you cinsdered LDN? I've seen a few people who are doing very well on it (more Chron's patients than UC).

How are his symptoms? Moderate? Severe? I am assuming they are severe if he is considering srugery. Have you tried antibiotics? I personally think it's worth trying, it's possible he has a bacteria on top of his UC thht is making it very difficult to treat.

I would try seeing another GI. It can't hurt. Just try to be supportive. Let him know that you will be there for hiim whatever he chooses. Life with severe UC is not fun and surgery CAN give him his life back. I've seen a lot of people who used to post here, have surgery, and move on...
Posted 3/18/2011 6:25 PM (GMT 0)
     You're husband is lucky he has a GI who even suggested surgery.  My GI would not recommend a surgeon to me.  All he wanted to do is try more and more drugs.   After suffering with UP for twelve years, running the gamut of meds....6MP, Remicade, Humira, not to mention all that prednisone, Colazal and rectal meds...I had to take matters into my own hands.  I found a surgeon in Philadelphia (I live in south Jersey and would NEVER consider having surgery in a local hospital).  Thank God for the internet because I wouldn't have had a clue as to where to turn.  The surgeon who operated on me is head of colorectal surgery at Univ of Pa Hospital, been in practice since 1978 and served his residency at the Cleveland Clinic.  I was not a candidate for j-pouch.  I was 63 yrs old at the time (64 now), was prednisone dependent for two years and had some other health issues, so was considered a "high risk".  I told the surgeon I had no problem with the idea of wearing a "bag".  I was just sick of being sick.  I had a total colectomy with end ileostomy on June 28th.  While no walk in the park, I am soooooo much better since my surgery.  Before my operation I was taking 17 - 25 pills daily, now only take 1 for my blood pressure.

     Surgery is giving up......giving up being ill for the rest of your life.

     I wish your husband the best!

Posted 3/18/2011 7:16 PM (GMT 0)
If he truly isn't ready, then I would say a second opinion with another GI is in order. While he is doing that though, it wouldn't hurt to start researching surgical options and perhaps get a consult with a potential surgeon. I think it's better to learn about your options while it isn't an emergency situation. Sometimes you get a surprise out the whole thing. For example, I had no idea I would need three steps for a j-pouch versus two until I met my surgeon and he explained the reasons to me.

If it really seems like surgery is the best course for him but you guys are still scared about it (understandably) then I would encourage you to keep seeking online support and stories from people who have been there. That is a big part of what helped me become comfortable with my decision. There are some folks here, more on the Ostomies board. There is also a helpful community over at C3 life and the Uncover Ostomy Facebook group has been helpful to me, too.
Posted 3/18/2011 7:31 PM (GMT 0)
Surgery is not giving up! Not at all! Its winning its literally taking that colon to the trash. If he isn't ready then that's fine but don't dscount surgery because you don't want to give up.
Posted 3/18/2011 9:05 PM (GMT 0)
I agree with those that say surgery is not giving up...it is taking back your life. I would research to find a very experienced surgeon, especially if he tries the j-pouch. You don't want to be in an emergency surgery situation and end up with bad results. From what I have seen (and my surgeon concurred) Remicade won't last forever. I would rather start living my life again now and save some money.

I am having my take down surgery on April 4th and am so excited. The bag doesn't bother me anymore, but I can't wait til I get to go the old fashioned way again.

Ask us anything!
Posted 3/18/2011 10:46 PM (GMT 0)
From everything I've heard, the number one complaint about surgery is that people wish they had done it sooner.
But having any kind of surgery is highly personal. I think a consult with another GI is a really good idea..... I hope you find a doc and get an appointment in a timely manner.

Keep us posted!
Posted 3/19/2011 12:53 AM (GMT 0)
Surgery is not giving up at all. The surgery I had in November will allow me to do all the things I love again (just got permission form my surgeon this week to snowboard, backpack and bike again). It is a good idea to get many opinions, but don't let fear of the unknown stop your husband from doing something that could make him feel soooo much better.

I almost had to get emergency surgery, and being in that situation was terrifying. Fortunately the one infusion of Remicade (I had a horrible reaction and that is all I could take) was enough to heal my colon a bit and buy me some time and consult with a top CR surgeon and get surgery under better terms. Had that one infusion not worked, I would have found myself on an operating table in a very weak and sick state... and with a hospital general surgeon instead of someone who specializes in colon surgeries. Sometimes severe flares come on so fast. I was in the most perfect 4-month remission in ten years, and then two weeks later found myself in the hospital, 25 pounds lighter and barely able to walk. I agree with what everyone is saying. If you choose to try other meds, still consult with a CR surgeon so you have all the information you need to make a wise decision.
Posted 3/19/2011 1:49 AM (GMT 0)
Why do people, including most GIs, think that colon surgery is giving up when they don't think taking the appendix out is giving up?

Is it because we will have periods of remission? Or is it because we need our colons more than we need our appendixes? What if our colons are not working most of the time? Do we really need non-working colons?
Posted 3/19/2011 2:14 AM (GMT 0)
Unless it is an emergency, make sure you get as many opinions as you need from doctors... until you feel better about the idea of surgery. I am not considering surgery... but I've been to two doctors in the last year, and am considering a third one. This is probably the most urgent thing in a person's life if it isn't under control... so it makes sense to give yourself many options and opinions.

Medicines have not worked well for my disease, but I wasn't living a lifestyle conducive to healing either. Last summer I was having 10-15 bloody messes of stools and horrible urgency. I couldn't seem to travel even 10 miles at my worst, and did have one time when I soiled my pants. Even prednisone did not work for long. I have since remedied some of my lifestyle choices, and begun to educate myself. Please get an education on the human body and the different possibilities with your husband's symptoms. It takes a long time to heal, but I think it's working for me.

Whatever you decide, make sure you are educated enough to feel comfortable with your choice. The more I learn about the digestive system and the human body's immune system the more peaceful I feel about things. It becomes less of a mystery, and I can then look at my symptoms in better light.

Good luck.
Posted 3/19/2011 5:56 PM (GMT 0)

tkakes66:

I would definitely see a different GI and pursue a retry of the Remicade route and at a minimum get some rectal meds in there as well.  Surgery is always an option and I am not sure why some people frame sugery in the way they do.  I never thought that surgery was giving up, it's just another treatment modality when there are no other options.  For some the meds are not appealing at all while for others like me the meds are worth trying until you have exhausted them.  There are plenty of people here who have started remicade only to stop for some reason only to restart it again and have success the second time.  Surgery for me is neither better or worse but another step in my flow diagram of treament.

If it were me I would seek GI care with someone else and get another opinion.

MyUC

Posted 3/19/2011 5:58 PM (GMT 0)
I was almost at the point of surgery after a severe flare that left me hospitalized for 19 days. I have been on Remicaid without a flare for 2.5 years now. and no other UC meds. It did take a few treatments so for me it was not over night. Hope you find what works best for your husband.
Posted 3/19/2011 6:04 PM (GMT 0)
Has your husband tried diet modification to treat his symptoms?
Posted 3/20/2011 1:03 PM (GMT 0)
I would try remicade again, maybe the doctor will relent. If he is doing better there should be no urgency to have the surgery. Try not to let him get dehydrated! That should be avoidable if remicade is working.
Posted 3/20/2011 6:38 PM (GMT 0)
i think UAB has a good GI department.
Posted 3/20/2011 8:04 PM (GMT 0)
If you're really not ready to give up, check out Aajonus Vonderplanitz's books.
Posted 3/20/2011 8:49 PM (GMT 0)
Surgery was the best thing I ever could have done. Don't be afraid...It will give your husband his life back....really. And NO MORE nasty drugs. Best wishes.
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