At what point..

So I'm usually on the ulcerative colitis page but jumped on over to this one to get some answers from you guys about the surgery you had. At what point did you realize that surgery needed to be done, and was it your decision or the doctors? I have Pancolitis. Been suffering for three months now trying every medication and it seems like my body is neglecting everything. Lost 60 lbs and have pretty much every symptom that comes with the disease. My doctors have brought up surgery and after what I've been through (two seperate flares lasting months, unresponsive to meds) I think it's the way to go. I think the 2-3 step J pouch procedure sounds very promising, I know the process and complications that can come with it, I did a lot of research, but it's always better hearing from people who have actually gone through it. i consult with a surgeon in a couple weeks but I'm scared about getting the surgery locally. Rather go to Cleveland or mayo clinic but it's a much bigger process to do that. Did you guys stay local or travel for your surgery. Thanks for allowing me to intrude!

A 2.5 year flare that resulted in a loss of quality of life convinced me that surgery was a better option. That was 14 years ago and I have never regretted my decision. I have my life back.

Sue

I had pancolitis as well. I was in a five year long flare. Some months were better than others but all in all it was five years of hell. In and out of the hospital, pain daily, incontinence, afraid to leave the house, missed time with my children who were young at the time....the list can go on and on. None of the long list of meds worked. I just couldn't take it anymore. Having accidents in the car on a regular basis driving my kids to their activities was no way to live. One morning I just woke up and said that's it, I'm done. Called my GI doc...she referred me to a surgeon....I met with him the following week....two weeks after that I was in the OR.

Best thing I ever could have done. I wish I did it sooner! I love my j pouch because it gave me my life back. Is it totally perfect? No but darn close. It's all about quality of life no matter how you get there. You can get there too with a permanent ostomy....it's a personal decision. I have two family members with long time j pouches so I had an advantage of knowing about the procedure ahead of time from them. The procedures were tough but for me it was all worth it. Good luck with your decision!

My GI had hinted around that I might need surgery but said he wasn't going to recommend until I went to Cleveland Clinic or Mayo for a second opinion. I had pancolitis and 3 instances of CDIFF. Much like ByeBye UC, It was to the point that I could barely work , daily accidents, not able to eat, in the bathroom 30 times a day and nothing was helping me. I felt like I was dying and I was losing hope of ever being able to do anything again. A fecal transplant did cure C-Diff finally. My fiancé and my dad decided I couldn't wait another day, loaded me up on a Monday morning and we made the 3 hour drive to Cleveland Clinic ER from our home in southwest Ohio. I was scared to be that far from home and then more scared of what they were going to tell me. I was immediately admitted and they started doing all sorts of tests. On Wednesday, they told me it looked like a bomb had went off in my colon and there was likely no medicine to fix me. The next day my colorectal surgeon appeared at my bedside and said that she couldn't let me go on in that condition, and she would be in on Saturday morning to do the Phase I surgery for the Jpouch. I cried the rest of the day but I knew I couldn't go on like I was. Fifteen months later, I am through all of my surgeries (3 due to prednisone dependence) and my life is great. I am able to do things I haven't been able to do in in years. Last weekend, I rode my bike for 9 miles.
As for where to have your surgery I always vote for Cleveland Clinic. Not only for there surgical expertise in this area, but the care you receive after your operation. They have a specific floor for colorectal patients. The staff is amazing and treat you great. They understand the recovery process and there isn't anything they haven't dealt with in this area. They even remember you when you are back for your next surgery. If you go to a hospital that doesn't specialize in this surgery, you might not get this level of understanding and support. But just be sure you are going to a very experienced colorectal surgeon. You will find lots of wonderful people on here for advice and support.

Post Edited (buckeyecrohnie) : 9/4/2015 8:24:23 AM (GMT-6)

UC literally ruled my life for 6 years. There was a short and sweet 10 month remission on Remicade and when it failed and Humira did nothing, I cried UNCLE and found myself a great surgeon. She was recommend to me when I went to the Pelvic Floor Center in Minneapolis to have a test done to see if I was a candidate for a J-Pouch. On this surgeons recommendation, I opted for the Ileostomy and not a J-Pouch primarily because the failure rate for people over 60 (I was 60 at the time) it too high and I just couldn't imagine living that nightmare. So in Nov. 2012 I had a Proctocolectomy with end Ileosotmy and anal closure. The surgery went very well though I did have a set back 7 months later with a Parastomal hernia (surgery went very well) and 2 months later, scar tissue that caused a total blockage (surgery went well here too). All of these issues are not unheard of and I've had no trouble since. By the way, all surgeries were done laporscopically with the actual removal of the colon and rectum being done through the anus.

As the saying goes, I got my life back and I can happily go down the road to senior citizenship worrying only about the normal aches and pains and not pooping my pants or worrying about where the closest bathroom is. I travel, swim, hike, take care of grandkids, garden and enjoy having my freedom back. The only food I stay away from is raw broccoli and corn but everything else is on the menu for me.

Whatever choice you make regarding surgery, it's better than the choice to live with UC. And if you can, try to find a support group. I am the Vice Pres. of the St.Paul Ostomy Association in Minnesota and we meet once a month Sept. thru May. There is nothing like being in a room with people who have all made a very tough decision or even a life saving one, about having an ostomy. Not all stories have happy endings, but at least our members are sharing with people who have a better understanding of what they are going through.

Please keep us posted and good luck !

I was diagnosed with ulcerative proctitis at age 52. Suffered for twelve looooong years before taking the bull by the horns and making my OWN decision to have surgery. My GI doctor wanted to try more and more meds. After seven years on 6MP, which did absolutely NOTHING and now in retrospect I was NUTS to stay on it that long, then Remicade and finally Humira, which all failed, I just couldn't stand it anymore. I was prednisone dependent for the final two years I suffered with the disease and it was killing me.

I found my surgeon online since my GI doctor told me he didn't know any colorectal surgeon I had my surgery at Pennsylvania Hospital in Philly. I live in south Jersey and knew I didn't want the surgery done locally. I was not a candidate for j-pouch but I didn't give a hoot. I was just so sick of being sick. The only problem now is....my surgeon left the anus...took the rectum and colon though and my problem was always the rectum. My disease NEVER traveled further than the rectum. The operation was June 28th, 2010. I was doing great until last year when the UC decided to attack the anus. Since my surgeon retired in 2013, I am seeing a colorectal surgeon locally. He did biopsies last November, no dyplasia, no cancer...however, I still have discomfort and they cannot figure out why I have strictures in there...well, if they don't know, I sure don't! Anyway, having more biopsies done on the 17th of this month. My new surgeon told me last year he saw no reason to take the anus at that point. Well, we'll see what he says after the 17th. BTW...I was almost 64 at time of surgery and I am now 69. Otherwise, I consider myself very healthy compared to the mess I was in before surgery. Good luck to you!!!

Thank you for all your stories.. So I want the surgery done at cleaveland clinic (3 hours away) but I don't wanna have to set up multiple appointments back and forth before the surgery starts. What's the process to getting it done? I don't wanna be offered alternatives or have them try me on different medications, I just want the surgery. I'm done waiting months for medicine to never kick in and besides, I want this disease gone and out of my body once and for all, even if a certain medication worked, it's only a matter of time before it sparks back up again. Is it ultimately my decision? Or is it possible they can turn me away because they think there's other med alternatives.

You know when you are done, and it sounds like you have hit that place. Choices are limited when you get to that end zone. In my daughters case, we fought with all available weapons, and when that only brought pain and more symptoms, the decision was made for us. You can follow our journey by reviewing my posts over the last few years ( boring, but informative). 3 step was right for her, safe and healed in between. Agree that a skilled surgeon is key- worth a drive and stay. Follow up can be local if needed- do NOT go with a general surgeon or a local GI who is not an IBD expert. It is too complicated a disease. Hugs.

You see, when Cleveland Clinic knows you are traveling a distance to come there they schedule you for as much as they can in one day. It's an all day project to go but my family and I accept it. I don't have to go back until January. The office is very efficient and i never wait long to see the doctor. You sound like you are mentally ready for the surgery which is a big part of it. I think it would be a good idea to at least see what they say.

The best bet is to call a number and try to get a human being on the phone to help you with exact locations.

Thank you for your replies. Buckeyechrohnie, when you went to Cleveland did you have to drive a few hours? Were you able to do some tests and get a lot accomplished during your first visit there? Also how many visits to Cleveland did you have to make before getting the surgery appointment? I only ask because traveling back and forth many times before the actual surgery could be very inconvenient for myself or those that live further away from the campus. I was hoping on the second trip I would be getting the surgery done, realistic?

Thanks for the details Buck, I honestly rather go there and get admitted considering my level of inflammation and current state, but idk if they would do that since I would just be going to a doctors appt there and not in the ER.

Christine he was able to look at your rectum during your first visit to the doctor? What test was that? Also how has life been with the bag? Thanks for your reply