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Surgery Decision - Denver

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Posted 12/17/2014 7:35 PM (GMT 0)
Here are my stats, then my ?  I am 36 yrs young and have had UC for almost 20 yrs, dx when I was 17.  I have tried a few meds, but for the most part of the 20 yrs I have been on Asacol/Lialda.  A colonoscopy in April revealed a few polyps that were removed and non-cancerious.  I have had some normal days during this time, but major flares and hospitalizations, but an average day for me is pain, limiting foods, and bloody diarrhea.  I don't even see the doctor unless I'm incontinent.  Even then, the just give me prednisone, and I taper off and go back on the Asacol.  It seems like the older I get the less the Asacol works, or maybe I just don't feel equipped to deal with this anymore.

During a flare I always read up on surgery, get scared, and do prednisone.  I am now considering surgery (again), but the bag scares me, as I have a weak stomach.  I'm also a busy mom and student.  I get hopeful when I hear people say they got their lives back.  In short, I don't know if surgery isn't reasonable, since I don't know if my UC is severe or not.  I've had it for so long, that I don't know what would be mild or severe (pretty sure I'm not on the mild side). 

Also, does anyone have a recommendation for a surgeon in or near Denver?

Posted 12/17/2014 8:30 PM (GMT 0)
I don't know af any surgeons in CO, as I'm in Mass. But, my UC was pretty mild too- my day to day symptoms were managable, so I thought. Despite clinical evidence of active disease, bleeding, frequent incontinence, & spending 2-3 hours per day in the bathroom, I thought I was living large! My GI first recommended surgery to me about 5 years ago. I just went thru with it this past April, & it was due to a large stricture developing from scar tissue in my colon, essentially blocking it off. Now, in hindsight, I cannot believe I let myself live as I did for so long. I'm a Mom too- post-surgery was a little hard, but I had my husband to help, & my daughter is 12, so she helped a lot too. And you're really only down for the amount of time you're in the hospital- when I got home, after 5 days, I was able to cook dinner the 2nd day or so. Not do a lot, mind you, but enough. The bag is... it can be a hassle, I suppose, but not really- it's super easy to empty, change, order supplies. It takes maybe 20 minutes of my time, per day- when I don't change the whole deal. When I do change everything, that takes about 10 mintues total. It's not frightening once it's there, it just is part of you. You really don't even see it unless you're actively looking for it!
Posted 12/19/2014 3:18 PM (GMT 0)
Thank you so much! I was able to get one name of a surgeon from this board.

People say they've tried everything. I haven't tried everything, but my doctors seem to feel it's Asacol with prednisone as needed. The pred. is killing me, physically and emotionally. I won't do it again.

I appreciate your story. I also have a 12 year old who could help. You've made it sound challenging but do-able. I will seriously consider this. Thank you again!

Leisha
Posted 12/19/2014 9:20 PM (GMT 0)
I live in the greater Denver area and my surgeon was Dr. Craig Brown. I highly recommend him-- even wrote a blog post about how thankful I was to have him as my doctor.

http://ostomyoutdoors.com/2011/11/20/part-four-in-a-series-i-am-thankful-for-my-surgeon/
Posted 12/19/2014 11:06 PM (GMT 0)
Thank you for the blog post and the recommendation! I had looked at that practice before, but not necessarily Dr. Brown. I am definitely going to keep his info. handy. He sounds wonderful.
Posted 12/20/2014 12:25 PM (GMT 0)
Prednisone is horrible and you should try to stay off of it. Have you tried any of the biologics? Remicade? There is also a new one out called entyvio.

I'm really happy I had the surgery. I have a j pouch that was done in two steps. I was 41 at the time of surgery. It was tough as my kids were young at the time but it all worked out great. It's givien me my life back. It's great to be off the UC roller coaster. I did exhaust all the meds though.
Posted 12/20/2014 8:34 PM (GMT 0)
Is your GI an IBD specialist? It sounds like you need to start with a new GI or a second opinion. Asacol is basically coated aspirin. It only works for a very mild cases, and it seems very wrong that that would still be your primary drug so many years out. Prednisone is dangerous.

Surgery is certainly a possibility, but there are lots of other options that it sounds like you haven't explored. Make sure you get an IBD specialist, not just a regular GI

Hope you can find some relief soon.
Posted 12/22/2014 12:46 AM (GMT 0)
I have not tried biologics. I had a new GI the past year, and she gave me prednisone and sent me home to 'research' Lialda and 6MP (there may have been a third drug) and told me to call her and tell her which one I wanted prescribed. I saw the side effects of them, got scared, and asked for Lialda.

I was in a small remote town, so I have no idea if she was an IBD dr or not. I thought I would see her father, a well known GI, but they have the same last name and I ended up getting her, fresh out of residency. She even calculated my dosage wrong and had to correct her math. Now, I recently moved to the Denver area, so I have many more options available to me in terms of GI doctors. I figured they were all IBD specialists.
Posted 12/22/2014 1:45 AM (GMT 0)
Nope, some Gi's just dabble in IBD and are not following best practices or recent developments. The CCFA website has IBD doc's that should be considered. I agree, no more Pred. Save it for an emergency, but it works less well over time(and takes more of it with more risks). A biologic like Remicade might be fab for you. At least give another 5asa a try, and consider rectal meds. Your quality of life does matter. Surgery is a big step, you may be able to sidestep it, but you need a new recipe.
Posted 12/22/2014 1:50 AM (GMT 0)
Maybe I will try biologics. I have been given the name of a GI doctor here in town, so I will see if I can get in to see him. (Don't laugh but I have a severe mental block about rectal meds. Just do not think I could do it!)
Posted 12/22/2014 1:55 AM (GMT 0)
I will add that I was dx at 18, and due to my age I saw a pedi GI, at a major hospital in Dallas (I don't know but I would assume he's one of the best). He initially put me on the 6mp, Asacol and Pred. That was the first time in over a year I had remission. When symptoms started returning, he told me the story of one of his patients who decided his colon needed to go, and then had a great life with a perm ileo. Right after that I got pregnant, and had to start seeing a "grown up dr", who never changed my meds or suggested surgery. And so it went. (Just an FYI on why I consider surgery).
Posted 12/22/2014 3:27 AM (GMT 0)
I am leass than two weeks post surgery. I have a J pouch now. This is the best decision I have ever made. Find a GREAT surgeon. I did try some biologics before deciding to have the surgery though. But I mean this when I say the best decision. I was VERY nervous about the sugery but I am so happy now. Even jsut a few weeks post surgery I have more confidence to be away from a bathroom than I have in a long time. yesterday me and my wife went to the mall and I didnt have to go to the bathroom once!
Posted 12/22/2014 4:05 AM (GMT 0)
I am so happy for you! I truly know what it can be like at the mall. My kids 8 and 12, look so distressed if I tell them I need to find a RR, and then they ask me, quite in public, if it's #1 or #2! I just dream about being 'normal'. I know that's not in the cards, but I want to get better than this.

Thanks again for your story and I'm so glad you have your freedom from this disease.
Posted 12/22/2014 3:39 PM (GMT 0)
Katmom, there is only 1 GI dr in my area listed with CCFA. On his picture, he looks kind of young (late 30s or early 40s maybe)? Should I look for someone more experienced?
Posted 12/22/2014 3:44 PM (GMT 0)
It says he graduated from med school in 2001 and has 9 yrs experience in the field. I wish there were some way to find reviews of drs. But they can probably pay enough to have bad ones deleted.
Posted 12/23/2014 1:20 PM (GMT 0)
You could try the UC board and see if anyone knows that doctor.... but really I think with just about any IBD specialist you'd get better care than you've been getting....
Posted 12/23/2014 2:24 PM (GMT 0)
Good Point! I also noticed there's a University Hospital about an hour away. They have a Crohn's and Colitis center there. The director was trained at Cedar Sinai, and one of the professors did a residency at the Cleveland Clinic. Of course, I would be getting a less experienced doc under their supervision. I have a local GI doctor who is supposed to look over my file and if he doesn't want to see me I may go to the University of Colorado.
Posted 12/23/2014 3:34 PM (GMT 0)
University hospital is a great idea, as is crohns and colitis center. They see more patients, including complicated cases, and they know more.
Posted 12/23/2014 4:14 PM (GMT 0)
Thanks Blueglass! This has been very helpful.
Posted 12/23/2014 10:18 PM (GMT 0)
Of course only you can decide what is best for you, but I also had U/C for 20 years before going for a complete Illeostomy (no choice) and it was the best thing that ever happened for me. No more prednisone, or continual scopes and that horrible clean out routine.
Once you get the hang of it if you go in with the right attitude it just becomes a part of a much better life. Good luck WaterMaster
Posted 12/24/2014 1:52 AM (GMT 0)
Watermaster,

Thank you! Everyone's experiences really do help me. I am, of course, concerned about side effects. What good would it do to get my UC in remission if I get cancer? I am also starting to get joint pain. I think I may give biologics a try. However, if it does come to that, I found out that the place I will be going does laparoscopic surgery and the head surgeon worked for 8 years as a surgeon at the Cleveland Clinic. At least I have options. By the way, your medical history is impressive! You have overcome a lot!
Posted 12/24/2014 11:07 PM (GMT 0)
Thanks Damien. I feel badly for you that it went so horribly! I was learning more towards a loop ileostomy with eventual j-pouch. But yes, trying meds first. That just sounds terrible and I'm so sorry you had to endure that.
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