Surgery scheduled

I have decided to go with the permanent ileostomy and surgery has been scheduled for December 18th. I have to meet the surgeon one more time, go to the hospital for pre-surgery testing, and see my primary care doctor for clearance for surgery, and then I'm all set.
I hope I'm home for Christmas

Best of luck with your surgery. You'll be UC free for Christmas - what a great gift! Please keep us updated.

There are some people here who didn't have luck with Remicade and do have luck with Humira. I think Sweetie is one of them. I think you could get it covered if you said you had issues with something else that it treats. Arthritis perhaps? I know you've made your decision but I know I would want to exhaust every option before having surgery. Your doctor is probably right, good chance it wont work butI have seen a few people here who have been remaining in remission from Humira for years.

Oh and let me add this real quck, while im thinking about, incase noone remembers. Stoma placement is one of the most important parts. So, when you go the ET to get marked (this is one of those things they dont tell you) wear your normal clothes, the clothes you wear to work, or your favortie jeans. Dont go in sweatpants, or exercise pants Because the ET will have you sti and stand and such to see where your clothes go and all, so you want to have the best placement possible and thats easiest for her ifyou are wearing your normal clothes!

pam222 said...

notsosicklygirl said...
Wow, huge decision but I can see how it can lead to a happier life for those that are suffering. I wish you the best of luck in healing and future health. I hope you are feeling up to the holidays. I am not sure how long it takes to heal from the surgery but I think it is pretty tough. You will probably be cutting it close, no?
Did you ever try Humira?

thanks. The recovery time will be weeks, but I should be in the hospital for 5-7 days.
I never tried Humira, as it is not approved through my insurance. My doctor also did not believe it would be useful if Remicade didn't work.

Notsosicklygirl is right, I'm sure your doc can mention that you stopped responding to Remicade and that can bypass the other issues. Humira has been a lifesaver for me, but it's sad to hear that your insurance isn't covering for the meds. What your doc told you about Humira being a waste of time since Remicade didn't work is so not true. I had an allergic reaction to Remicade, and I switched to Humira the same month I reacted to Remicade and have been in remission since. That was May 2007. :) Hope all goes well for your surgery.

I hope you have great success with your surgery and a speedy recovery, be sure to update how things went.

:)

20 mg prednisone is nothing
Ask your doctor for 30-50 mg solumedrol for a few days and increase the prednisone to 60 mg. Start some other meds like Lialda and add a strong probiotic like VSL#3. Remecaid is not the last drug. I used it and am on to others. Understand being med free is clean for your body but I have to at least try to talk you out of it.

Burli said...
20 mg prednisone is nothing
Ask your doctor for 30-50 mg solumedrol for a few days and increase the prednisone to 60 mg. Start some other meds like Lialda and add a strong probiotic like VSL#3. Remecaid is not the last drug. I used it and am on to others. Understand being med free is clean for your body but I have to at least try to talk you out of it.

I have been on Prednisone for almost a year. I have been on 60mg for a month or two. I have been on 40 mg for quite a while. I am only on 20mg now because going below that has made things worse, as I am now dependent on it. It does not really help but I can't get off it either. I am not willing to do high doses of prednisone anymore, as I was developing glaucoma and high blood sugar. My doctor thinks a big reason why I should have the surgery is because he has not been able to get me off the prednisone and I have bad side effects from it.

I kind of feel as though I shouldn't have posted this since it seems everyone is trying to talk me out of it. I know I have not been diagnosed for long (one year), though I have actually been sick since August, 2007. I have been in a continual flair. I never get better. High doses of prednisone didn't help either. I am prednisone dependent and developing problems because of it. I have accidents all the time. That is the biggest thing for me. I HAVE to go my internship and school and take care of a baby, and I do not want to lead life running to the bathroom and not always making it. I'm in my 20's. It's not like fainting in public or something where people might be sympathetic. Having an accident in public would just be completely embarrassing and disgusting. Anyway, I've made my decision with the advice of my doctor and the surgeon. Thanks for the well wishes.
Realistically, the fact that I may not have insurance in a few months is also part of it. I wouldn't even be able to get medications and I can't live like this anymore.

Pam, you will have pro-surgery people and anti-surgery people. No one can make that decision but you alone. You know what is best for you and what isn't. We won't know how we will feel in your shoes until we are there. I was very anti-surgery when I first joined HW but then as the years went by and I was reading the success stories of people that have had surgery, my whole view has changed to very pro-surgery. I wish you well and when the day comes, I hope your surgery goes smoothly, that you heal quickly and you get to enjoy Christmas.

I mean no harm. When someone tells me they are getting their colon removed I take it very seriously as I have wrestled with that decision for 25 years. I want to know that person’s reasons and learn about what medications they tried. Also, there is a chance I could help them keep their colon. Different doctors have different methods and opinions and one may help you decide surgery is best while another not. If one day I post on this UC forum that I am getting my colon removed then I hope there are posts that try to talk me out of it and give educated reasons I may not have thought of. I would hate to think folks in here just say “Way to go; good for you; I support your decision” but are really holding back what they really feel in fear of hurting my feelings. I’ll go to an ostomy forum for support about getting my colon removed.

Pam, I understand your doctor’s reluctance to try Imuran; it scared me when I read about it. I have been on it for 3 years though and I had no problems. I started reducing my level and I’m now in a flare. But I had three very healthy years of vacations, working out and fun with the kids. My doctor reduced the Imuran by half and 6 months ago and I started this current flare. So I could do the same as you. I wanted to know why you made your decision in order to educate myself. Thanks for answering my questions and good luck with your new life without the worries of medication side effects and accidents! Looking back at all the medications, diets, homeopathy treatments that wasted my money and time, hospital stays sickness, accidents, missed life experiences… I have to say that if I could go back 25 years and make the decision again (knowing that I might have all that in store for me) it would be a hard decision to not get the surgery. When in remission I'm glad I have my colon, when in flare I'm sorry I didn't get it removed years ago!

I understand wanting to question what I have done, why I have decided this, etc.

Yeah, I will always need ostomy supplies. I was also concerned about that. I guess my insurance may not even cover them anyway, but the ostomy nurse said she will help get me set up to get them free through one of the companies. While it would suck to have to pay for the stuff out of pocket, I know it will cheaper than some of the medications. I'm almost glad Remicade didn't work because I certainly can't imagine paying for that.
I have had a hard time finding good medical care around here. I went to two other GIs before mine (and my primary care doc and a couple ER docs and another doc at the school clinic) who just dismissed me for various reasons. The 2 GIs wouldn't do anything because I was pregnant and "you get sick when you're pregnant". Yes, but not for a YEAR prior to being pregnant and not in this way. I liked my doctor for at least taking the time with me to actually do a scope and diagnose me and realize I was not just making this all up. I've been told he is a good doctor and doesn't push surgery unless he thinks someone really needs it. He had told me that if my scope showed any improvement after the Remicade he would not suggest surgery, but after a year of being on Asacol, Prednisone, and trying Remicade, my scope only showed that things had gotten worse. I don't know why he hasn't suggested that I try every other drug. He just told me there wasn't much more he could do for me. There weren't many other GIs for me to see that my insurance covers, as I have already seen him and 2 others.

I can see where you're coming from. With Remicade, Pred and 5asas not helping, you're in a bad situation. Did you ever try probiotics or SCD diet? I've tried and it didn't help me but I am happy I gave it a shot. I would definitely have surgery if nothing helped me. It is going to free you from the accidents and anixety. When I was flaring badly, I was scared to leave the house. I missed out on so much. You will have more time with your family and you wil be able to do all the things you want to do without worrying about an accident. I don't have insurance and I defintiely couldn't afford Remicade or Humira. I would have to try to get into a clinical trial or a patient assistance program of some kind. That is always stressful, not knowing how you wil pay for medications you need. I currently get all of my meds for free through patient assistance programs thankfully. I haven't heard too many huge success stories about Immuran and I can understand not wanting to wait around for months to see if it works. Like I said, a lot of this stuff seems to help temporarily and then stops. I am lucky that Asacol has helped me so much. I hope I don't have to worry about surgery for a while but people like you, who are strong and ready to face it, make me see that I can do it if I have to.

Do you use Rectal meds at all? I think the combination of rectal meds with 5asas is what pulled me out of my flare. When I was using Asacol alone, I was still flaring. I take a higher dose of Asacol. Have you ever gone up to the max dose? 12 a day? a take 9 and Canasa at night. I have also used Canasa morning and night with 9 Asacol a day. Not sure if any of these things help if you're already using pred?