Proctocolectomy Surgery-Age 69

Tough decision. I would think since you've had such great luck keeping things managed with medication for so long, maybe trying biologics would be a good option. You never know, maybe you will be lucky and get back to 100% indefinitely with biologics. I personally think a working colon is better than surgery. I am thankful for my jpouch because I was in an endless flare up and I didn't see any end to it. I ran through every single medication in a short period of time, I was out of options and I had no hope.

I was like you though, in the way that I worried about getting older and facing a more challenging surgery and slower healing due to being older. I knew with my particular case of UC, it was very difficult to manage and the likelihood of saving my colon for another 5 years was slim, never mind 10 or 20 years. I had a lot of thoughts about "what ifs", like what if there is a cure or a treatment that would enable me to save my colon. What if something came about today or tomorrow, or even in 5 years. I have come to terms with the fact that, if I had lost another 2 years to flaring, it wouldn't have been worth waiting. I have been living such a fuller life. On the other hand, you could potentially live just as full of a life on biologics.

if you really want to avoid drugs, surgery could be a good option. I am 100% med-free now and I love it. I feel so free of medical expenses and doctors appointments - it is something I appreciate every day. I do however go to the toilet more often than a person with a working colon and I don't love that aspect. With an ileo, you have to have a prescription for supplies and you have to buy them regularly, it's not a huge inconvenience because you find what works for you and you don't have to change that often, so it lasts a while, but it's still something you have to consider every time you do anything (do i have my kit, car kit, desk kit, travel supplies...)

Hi! I am also 69. Wow, you sure suffered a long time. I developed UP (my disease was always in my rectum and never traveled into my colon during the twelve years I suffered) at the age of 52. I was on 6MP for seven of those years and it didn't do squat except raise my liver and pancreatic enzyme levels to alarmingly high status. I tried Remicade (failed after 3rd infusion) and then Humira, which I tried for three months with no change. I was Prednisone dependent for two years straight and it was killing me. I had my operation at age 63 (two months shy of my 64th birthday). The doctor told me I was NOT a candidate for jpouch. I didn't care, I was just so sick of being sick. Since I live in south Jersey, I didn't want to have my surgery locally. Instead, I found my surgeon, online (because my GI doctor refused to send me to a surgeon, he just wanted to try more and more drugs). My surgeon was chief of colorectal surgery at Univ. of Pa. Hospital and trained at the Cleveland Clinic. Unfortunately, he left the anus, and I believe a bit of the rectum to create a rectal cuff. In his opinion, there are more complications when they try to take the entire anus, colon and rectum at the same time. My surgery was in 2010. All was well until Aug of 2014, when the disease came back inside the anus. At the moment, things seem to be settled down. My surgeon retired in 2013, so I am seeing a colorectal surgeon locally. He has performed two biopsies, no dysplasia or cancer and he does NOT recommend surgery to sew the anus closed.

You will have to check with Medicare. I was still on Personal Choice, Pa. Blue Cross and Blue Shield, at the time of my operation and everything was covered. I don't see why Medicare would not approve it. You have a logical reason for having the operation.

How is your blood pressure? My blood pressure was uncontrollably high while on prednisone and I developed prednisone induced diabetes. Thank GOD my blood pressure has been well controlled and I no longer have the diabetes. Prednisone is a killer. My GI doctor used to call it the best/worse drug. You may be fortunate enough that the biologics will help you. Every individual is different with this disease. Good luck to you.

That was Bystolic for the blood pressure-Typo

CarenZ,

Sounds like you have adjusted well. I see where some surgeons remove the rectum and others don't. Since my flares start there i can"t see a reason to keep it (except as you say farting is over-rated)!! Was the rectum rectom removed during the original surgery and any issues/healing time?

Wow 3 weeks dancing at a wedding. Thats awesome. No I haven't seen a surgeon yet. I see my GI for a follow-up in about 7 weeks for my current flare. I know he will push Biologics (That's what GI Drs do) I am going to ask about any surgeons he would recommend and see how he reacts. If he does not recommend one I guess it's own to the internet in my local area to check (Marietta/Atlanta, Ga)

I will have a follow up with my GI in about 6-8 weeks and will see if he will recommend a surgeon-if not I will start my own search. Thanks for your input.

I am surprised that your GI hasn't pushed surgery, due to the increasing risk of cancer with active UC. I had UC for 25 years mostly fairly mild and controlled with 5-ASA meds. I then had rectal cancer develop. Personally not a fan of surgery particularly because I had only minor difficulties with my UC, but had no choice.

I would guess that no surgeon would leave a rectum in a patient with active UC (aside from emergency surgery). Not uncommon to leave it with Crohns if there is no disease in that area. I would guess the OP probably has confusion between rectum and anus. In an end ileo, for UC, some surgeons will leave the anus or a part of the anus. That is what I have and have had no problems. At the time I didn’t want to deal with the healing of the butt wound which can be problematic. Happy with my decision

You will be assigned to an ET nurse who will pick the location of your stoma; the surgeon does not select it. They take in consideration patient activity, clothing, weight, etc.

Sue

I have to clarify something here. My rectum is GONE and so is my colon. I have only 2cm open down there which the doctor said is the anus. However, they refer to where the cut off is as the rectal cuff. In order for my surgeon to remove all of that during one operation it would take a long time on the operating table. During the operation, I started bleeding. I suppose the best solution was to try to finish things up ASAP. However, he SHOULD have told me he left the anus. I was under the impression all of it was gone. Yes, I do have disease inside that itty bitty part of the anus. My new surgeon said NO REMOVAL necessary. I have had ongoing problem with discharge from the vagina. Been to the gyn numerous times...nada...they cannot find anything!!! Had PAP tests, CT scans and MRI's..all clear. The Cort suppositories cause more irritation. So, I have been soaking my butt in warm water with Epsom salts and things seem better. No pressure inside. I do have to have yearly biopsies, which is fine with me. My life since my operation has been soooooooo much better than my life before.

Christine1946, I remember you from the UC board. I had ongoing vaginal discharge for years. Finally, my GYN diagnosed a chronic fungal/yeast infection due to pH changes. She prescribed a boric acid vaginal suppository. That cleared it up in two weeks. I will occasionally have a bit of discharge, and I use a suppository as soon as I see it. That always stops it. So nice to not to have to wear a liner all the time.

I have had a proctocolectomy 11 months ago. I am 62. I lost my colon.............6 years of UC brought on by chemo for a blood cancer. I tried several biologics. In the UK, surgery is still preferred over drugs..........this is what my English Gastro Doc tells me. I found the surgery to be very doable and the recovery went very well. I now take few if any drugs have no gi issues. I would opt for surgery before it is no longer an option (lasts about 6 hours...); after a certain age the length of the operation maybe an issue. My life has improved dramatically. UC is one tough disease..........can't say the blood cancers were any worse.

Went for a follow up visit last Wednesday. I thought he just wanted to discuss all my test results. Nope, he wanted to dig around in there AGAIN. Hurt like a son of a gun. Later that day, I bled bright red blood out my vagina!! He told me I had mild/moderate UC inside the anus and the rectal cuff. He also mentioned that I probably am looking at surgery down the line. Down the line? That's a pretty short line I would think...I'll be 70 in August. Now, he is either waiting hoping he will retire before doing it or thinking I will croak off with something else. OY. At the moment, I still have discharge coming out my vagina, no blood. I am not having much discomfort, no pressure or anything. He suggested Canasa suppositories but I am only able to insert about 1/3 of the suppository because lack of room in there and to do this every third night. Well, I did it on Tuesday night and Wednesday, I was uncomfortable. So, I think I will just stick with the soaks and let it heal in there. He wants me back in August, but I will call, tell him every time he probes around in there makes me more uncomfortable than ever and if nothing is going to be done, to leave it alone. What you all think? OH...I did seek another opinion last year and that guy agreed with the doctor I am now seeing. He also said biopsies every other year.