HealingWell
Search Close Search
☰

The end of the road...

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/14/2013 4:13 PM (GMT 0)
Good luck rabbit, you seem to have a good outlook on things no matter what this disease throws at you. Glad to hear you have a supportive wife as well. If you do have to have the surgery, the only regret that you might have it that you didn't do it sooner like some people have stated.
Posted 11/14/2013 5:09 PM (GMT 0)
Same situation with me. Remicade and Humira did not really work. Prednisone is not working like it used to. Just started Simponi and hope that saves my colon. If not, hopefully I can wait out until Vedolizumab comes out. For the first time ever, my GI mentioned surgery. He seems to think it is inevitable. darn colon.
Posted 11/14/2013 5:16 PM (GMT 0)

ilusion said...
Please excuse me in advance for my ignorance on the subject. After surgery, our autoimmune system back to normal? ie if it is not going to distort the proper functioning of our intestines, we would be back to full normal?

A proctocolectomy will cure you of colitis since the colon and rectum are the target organs for UC but the auto-immune tendencies will still remain. So anything related to UC can still manifest in you. ie: liver problems, arthritis, ect. Even though I have no colon or symptoms of UC anymore, technically I am still considered to have UC. Crazy, stupid disease.
Posted 11/14/2013 5:20 PM (GMT 0)
Good luck Rabbit! Pls keep us posted on how you are doing.
B
Posted 11/14/2013 6:46 PM (GMT 0)
Lets talk numbers:
  • round number, say 30% of UC patients (some people say 25% others say higher than 35%) will need surgery in their lifetime to remove their colons for one reason or another.

  • 3-5% pouch failure rate over the lifetime of the pouch, much of that has to due with initial diagnosis for UC being incorrect and the patient actually having CD. Also the experience of the surgeon affects this statistic.

So at a 95% success rate j-pouch surgery is a lot more affective than any other UC treatment; I agree it's not the ideal treatment but for 30% of us it is the best current available treatment for the foreseeable future. I just wish that many of the other UC patients don't wait as long as I did, I waited 8+ years from my initial diagnosis and I suffered a good amount of those years trying different medications that were not affective. I am looking forward to my new life with out my colon that was making me feel sick all the time and controlling my life.
Posted 11/14/2013 6:52 PM (GMT 0)
Good luck Rabbit. Believe me, it's not the end, it's the beginning!
Posted 11/14/2013 9:40 PM (GMT 0)
There are a few pouchers here but 100's more at
www.j-pouch.org
that is where I used to live when my son was getting his.
By the way you will most probably have a 1/2 inch or so of
rectal cuff left if you get a pouch. Just so you know you can also get what is called cuffitis,and or pouchitis.
Not to be a downer,I pull no pucnches with this disease,
just educate yourself as much as possible
on the procedure and any possible problems.
Once the colon is gone its gone.
Old Mike
Posted 11/15/2013 2:34 AM (GMT 0)
@ipoop thanks for that blog link it's really good and informative. I've stayed current on Pluot's blog over the past few months (even if she is busy enjoying her new life and not posting recently :))

So here's a bit of an update. Treatment wise I spoke with my doctor today and we are going to continue at 40mg of prednisone, I'm going to stop the iron supplements (to see if that's exacerbating my situation), continue with the enemas and start my Humira as soon as it comes in (which is either tomorrow or Monday). I talked to him about a surgical consult and he said he had no issue with it and because he was in the VA and I wanted a group from Yale he informed me that the very group of surgeons at Yale actually perform the surgeries at the VA, so that's great news! If I feel comfortable with them I'll get great surgeons and it'll be fully covered! I expect to hear from the surgeon by Monday and have my consult within the next week. The idea is that I'll try the humira as I'm going through the early stages of prep for surgery and what not and if Humira fails then at least I'll have things set up. If the humira does work then I'll buy myself some more time if I need it.

Anyway, thanks for the support all I'll be sure to keep everyone updated. Oh, I also made my Christmas wish already...all I want for Christmas is a new butthole (idk why but that sounds funny to me). I've also been telling my wife today that for my daughters first birthday we will be playing "pin the ileostomy bag on the stoma", she didn't find it funny but maybe you folks will enjoy the dark humor in it.

Keep rolling with the punches all. Check back in soon.
Posted 11/15/2013 3:11 AM (GMT 0)
Rabbit,

A surgical consultation is a great thing to do in your situation, it doesn't mean you have to have surgery but at least the surgeon can tell you what to expect if you do have surgery. For me being someone who dreaded surgery for the first 5 years that I had UC and just having my first surgery 2 weeks ago that surgery really isn't that bad, I've had much worse flares.

One thing to consider is if you need 2 or 3 surgeries for your J-pouch. That depends on your surgeon's preferences (some surgeons will only do 3-steps for UC Patients) but it also depends on your condition at the time of your first surgery and most of the times if you are on Predisone that will mean that you'll need 3 surgeries.

You may want to consider talking to your GI about Simponi than starting/continuing Humira, if you look at the clinical data for UC patients Simponi is a more affective treatment than Humira.
Posted 11/15/2013 5:12 AM (GMT 0)
@ks1905 thanks for the advice. Unfortunately, the VA doesn't carry Simponi yet as it's relatively new and has to go through an internal process. Typically, the VA will get meds around 6 months after they've been approved. This is according to my doctor who is closely watching Vendulazumab(sp?). So again, I guess it comes down to how long I'm willing to limp a long to try the next best thing. I've done tons of reading between blogs, forums and just general information between the surgical options we as UC'ers have and obviously all of that will pale in comparison to actually experiencing it but I am definitely making sure I'm as educated as possible on the subject.

I'm glad to hear your surgery went well! I hope the healing process is quick and comfortable.
Posted 11/15/2013 9:30 PM (GMT 0)
A UK point of view here, firstly, share a room? That be nice! I had to share a ward with 10 smelly old men burping out of either end at will!!

I'm now 7 weeks post op, laproscopic all the way through my operation to liberate my colon from the surrounding tissues and arteries, when pulling my colon out it snagged on something and a tear caused stool to leak out. Then i was opened up to be washed out asap with loads of saline. I have a lovely 'T' shaped scar on my belly!

I approached my surgery with a very cavalier attitude, but the truth is the operation is one of the biggest you can go through. My recovery was ok, initially very painful with no proper pain relief but after day 2 things got better and once i could get up and about i improved rapidly.

Don't be scared about surgery, I'm 36, i wish i had done this when i was in my early 20's but i was too scared, i have missed so much of life because of being limited due to UC, its an evil disease that you are well shut of.

Don't be frightened of having a bag, mine is temporary hopefully, my pouch was checked this week in x ray, i saw my new intestinal path for the first time, no leaks detected so good so far!
Posted 11/15/2013 9:40 PM (GMT 0)
I started Humera 10 days ago. To my surprise, I started to feel better the next day. Every day I am feeling better. I hope it continues to improve things and eventually put me in remission. Right now I feel better the at any time this year.

Keep your chin up. I hope it works as well for you as it did for me.

Good luck! 

Posted 11/16/2013 11:10 PM (GMT 0)
@NABO yea you're right, I shouldn't give up on humira before I even try it. It's just tough to be optimistic after do many let disappointments when it comes to medication. As I said I will certainly give it a try and best case scenario it gives me more time to research and contemplate surgery, if not I'm still going to make sure I'm ready. Also, good luck with the humira I hope you continue to feel better!

Again, thanks everyone for the support! I'll keep you all posted.
Posted 11/19/2013 6:48 PM (GMT 0)
Just a quick update:

The Humira came in today so I will try it tonight and finally plan to start tapering off the pred, whether the humira works or not. I also set up my consultation for December 4th.

Let's see how it all plays out.
Posted 11/19/2013 7:34 PM (GMT 0)
Good luck Rabbit! Hope the Humira does it for you!
Posted 12/9/2013 3:40 PM (GMT 0)
Hey all,

Just a quick update.

So the humira has continued to work and I feel better than I have in the past 6 months. Even my GI was surprised since I've been so unresponsive.

So last week I still had my surgical consult. I have to say I was unimpressed with the surgeon. She is inexperienced but even more so than that she seemed to be pushing me not to get it by telling me all the complications about the surgery and what not. I understand she was trying to make me aware but being at the point that I am I would've also wanted some sort of reassurance that things could be fine and my quality of life increased...it just was not the experience I was hoping for. I'm going to chalk it up mostly to inexperience.

Another issue was that I haven't had a colonoscopy in almost 2 years which I know is not good. But the only one I've had they could not get beyond the sigmoid colon and the results from that and the couple of flex sigs I've had since show sever disease in that area. So she looked at my CT scan and she said I only look inflamed in the rectum and sigmoid area and that usually they don't do the surgery unless the whole colon is diseased. Seemed weird to me. So my GI came in the room afterwards (it was at the VA so both were available) and we discussed it. He thought the same thing as me that it didn't matter exactly how much was inflamed but how severe and unresponsive it's been. So again, inexperience.

So since I'm feeling great right now, there's no rush but we are going to schedule a full colonoscopy and make sure I don't have any precancerous cells and check the damage on the colon and go from there. My GI is hoping the humira will hold out until vendulazumab(sp?) comes out. Me, I'm sort of in a limbo of not knowing what to think. I know I feel good but I know it's only temporary. I guess I'm going to seek consult outside of the VA.

I'll keep you guys posted.
✚ New Topic ✚ Reply
12