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Proctocolectomy Surgery-Age 69

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Posted 5/31/2016 6:00 PM (GMT 0)
Typo- should have been "the Surgery"
Posted 5/31/2016 6:12 PM (GMT 0)
Typo. Should have been "the surgery"
Posted 6/1/2016 3:14 PM (GMT 0)
Enjoy golf, I'm not crazy about the idea of more surgery. As long as I can do the things I want to do and not in much discomfort, I am ok with the idea of leaving well enough alone. I have an appointment with my GYN on June 15th for, what they call, my annual. I haven't had a PAP since 2011. At my age, almost 70, PAPs are done every two years or Medicare will not pay. I still have a bit of spotting from the vagina and they cannot find out WHY. This is an ongoing situation since my operation, almost 6 yrs ago. I would like to think if it were anything serious, after all the testing, it would have been caught by now, or I would have gotten worse, which I haven't.

You are on a high dose of prednisone for a long time, enjoygolf!!! No tapering yet? How much prednisone have you taken since being diagnosed? Prednisone is a killer, beware of the horrible side effects. It gave me full blown osteoporosis, uncontrollable high blood pressure (now very well controlled) and prednisone induced type 2 diabetes (gone now).
Posted 6/1/2016 7:40 PM (GMT 0)
Christine1946, I have been on 40 mg Pred for 43 days now. Also Rowasa every night and 8 X 500 sulfasalazine ( just change from 4 Lialda daily cost sky rocketed to $500 copay a month) and 1 mg folic acid. Normally i am tapering by now but the bleeding will not stop. I have had UC for 52 years and this is the most Pred i have taken. I was fortunate to have a span of 6 years with no flare but the last 10 i seem to get one every year or 1 1/2 years.
Posted 6/2/2016 5:55 PM (GMT 0)
Update-having flex sig tomorrow to see what is happening with the bleeding.
Posted 6/2/2016 9:38 PM (GMT 0)
Good luck tomorrow. 52 yrs!!!! Holy Moly! After I was diagnosed, I did enjoy some periods of remission. Like the two years following my initial diagnosis I was symptom free. In 2000, I suffered a flare, got it under control and then enjoyed another two year remission. However, after 2002, I started flaring more and more often with longer periods of prednisone. I was under a lot of stress in 2003, daughter went through a bitter divorce, and things just went haywire with the UC. I was hospitalized in 2008, where I thought they were going to take me out of the hospital in a pine box I was soooo sick. I tried the Remicade and Humira in 2009, but my condition spiraled downhill where my quality of life sucked, big time. So, I decided in 2010 to do something about it before I got too old.
Posted 6/2/2016 11:57 PM (GMT 0)
Thanks Christine1946.
Posted 6/4/2016 6:20 PM (GMT 0)
Update- Flex Sig showed severe flare. Dr said Pred is not working. He said 2 options 1) Surgery or 2) Remicade. He is calling the surgeon Monday to give him the information so I will call and set a consult up.

This brings up several questions:
1. Will I still be able to play golf with the surgery
2. Any CR Surgeon recommendations in Marietta, Ga
3. Any idea on the cost of Remicade (Medicare Part D)

Thanks for any input
Posted 6/4/2016 7:09 PM (GMT 0)
I think your golf game will improve. You'll be playing without pain, without the anxiety of worrying if you'll make it to a bathroom if needed, and with a lot more energy once you're rid of that diseased colon! 😀
Posted 6/5/2016 1:11 AM (GMT 0)
I agree with Caren. My quality of life is greatly improved. I thank God every day that I had the operation. Otherwise, I wouldn't be here to enjoy our youngest grandson who is 21 months old. You can call Medicare about payment for Remicade, but in my opinion, go for the surgery. You've suffered long enough.
Posted 6/7/2016 12:51 AM (GMT 0)
Having Surgery Consult this Thursday. GI DR is still pushing Remicade very hard (wanted me to start tomorrow). Don't know how the surgeon will react to this. Biopsy not dew back for 10 days and will wait to see results before making decision. In addition PSA has doubled so seeing Urologist next week (maybe severe uc flare may have caused this). This brings the question on digital exam will not be possible after surgery and normally prostate biopsy is done through the rectum. A lot going on!!
Having a hard time getting the cost of Remicade since infusions are Part B Medicare but the drug is Part D. Looks like part B covers Ostomy supplies at 80%.
Posted 6/7/2016 10:42 PM (GMT 0)
I thought you were a woman!!! blush . Don't know why, I just did. Hope I wasn't telling you about the lady problems I've had since my operation..lol. Anyway, whatever you decide I wish you the best of luck. Sure the GI is going to push Remicade, they get kick backs from the drug company.
Posted 6/8/2016 12:09 AM (GMT 0)
No problem. With this disease you learn that nothing will bother or embarrass you. thanks for sharing. You are correct Remicade gets pushed alot and is very expensive.
Posted 6/11/2016 9:17 PM (GMT 0)
Update- Had a visit with the CR Surgeon. GI had already called him with information. He went over Pros and cons of surgery and answered all questions. He prefers not to do Laproscopic surgery when removing the rectum due to all the nerve endings. He has referred me to a wound/Stoma Nurse just for a consultation to talk about what is involved and any support groups that are local. He did say that the surgery rate has gone down since Biologics have come into the picture. One item that i am researching now is the Effect of Biologics on someone over 65-Haven't found much data but infection seems to be of higher risk. One other issue with surgery seems to be continued pain in the rectum area once it is removed (probably nerve ending related)? Have a great weekend.
Posted 6/12/2016 1:37 AM (GMT 0)
I had asked my surgeon about the laporscopic too and he looked at me like I had three heads. He said, "absolutely NOT". End of discussion about that. He also told me I was not a candidate for j-pouch. I hadn't even thought of j-pouch. By the time I sought out the surgeon, I already wrapped my head around having a "bag". What I didn't realize is that my surgeon left the anus. My disease was in my rectum, so why he did that, I have no idea. His explanation was that, in his opinion, there are more complications when the anus is removed. He did remove the rectum and colon. However, I have, what they refer to as a rectal cuff and the surgeon I am now seeing (mine retired in 2013) told me it is very difficult to remove the entire rectum when creating that cuff. Just my luck, my disease is now back in the anus. I am not in much discomfort because I don't use the anus, but, I do have to go for biopsies to make sure there is no dysplasia or cancer. My new surgeon does not want to remove the anus, he said it would be too much of an operation for me. I did seek a second opinion and that guy agreed. So, for the moment, I am in kind of a limbo. My new surgeon sees me every three months but when he examines me I would like to sail through the roof because of the strictures. Why he is digging around in there, I have no idea...don't know whether he's on a gold hunt or what. So, before my next appointment, Aug 17th, I am calling him to say I will just go in for the biopsies and forget the other exams. He said maybe "down the line" I may be facing the surgery. I asked, "How far down the line you think I got Doc? I am pushing 70!" Sheesh!
Posted 6/12/2016 2:37 AM (GMT 0)
enjoygolf - wow - you've been soldiering with the UC... I was diagnosed in 1997 and had surgery in 4/2011.... Sorry to hear you are having a bad flare - 40mg of prednisone is pretty high. without going into a long diatribe, one of my surgeons told me that we all get lumped in the UC group due to inflammation, but the cause of which may not be the same in each person...and, it will not be in the same locations either - some have over entire colon, some in one section, some in rectum.. My entire colon was removed, and a 'rectal cuff' was left (basically the anus). I haven't really had any problems - there is a mucus discharge - sometimes once a day, sometimes once every three days. My surgeon told me he left it for my "personal comfort." from what I've read over the years on healingwell, pulling the anus out puts folks through some trying times. My surgeon also said, if I ever have any problems with it, they can pull it out through the rear - won't have to cut my abdomen open again.

As far as recovery - depends on the health of the person. Some have recovered within weeks, it took me over a year to feel "normal" again.

As far as golf, if you give your body, and your mind, time to heal, you'll probably be playing short rounds of golf in a few weeks/3months, and full rounds after that.

take some time with your decision - it is a change to how you live life, but it shouldn't affect your life.

Best of luck and God Bless!
Posted 6/17/2016 8:40 PM (GMT 0)
My CR Surgeon thought it would be a good idea to meet with a Stoma Care Nurse to help in making my decision. Have it scheduled late next week. Talked with my GI Doc and since the Pred is not working i asked to start a taper schedule. Taking my time and doing due diligence before making decision.
Posted 6/18/2016 8:04 PM (GMT 0)
Most definitely, a MUST to meet with a stoma nurse. I met with mine about a week before surgery. I had a male nurse, felt a little embarrassed about it..but, hey, he was super! My stoma is on the left of my belly button and down about an inch past my waistline. You do NOT want it around your waist, I know someone who has it placed there and has nothing but problems. I have no idea where the brains of her stoma nurse AND her surgeon were when placing that stoma. Anyhoo....the reason mine is on the left, where most have theirs on the right is that all my organs are reversed...I have situs inversus. My surgeon told me I was his one and only...lucky me....and it didn't create any problems during surgery. He just stood on the opposite side of the operating table than he usually did. idea
Posted 6/19/2016 12:40 AM (GMT 0)
enjoygolf- you said you are in Marietta,GA area? Is that close to Jacksonville, FL? I'm asking because I almost had surgery at the Mayo Clinic in Jacksonville - they have several good GI doctors that perform the colectomy - a few each week. You might want to give them a call and have your GI see if he can talk with one of the Mayo GI's to get you seen as quickly as possible. That's all I can tell you about GI's in your area.
Posted 6/19/2016 2:28 AM (GMT 0)
Thanks for the info. Jacksonville is a little over 5 hours from Marietta.
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