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When to throw in the towel and opt for surgery?

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Ulcerative Colitis
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Posted 8/4/2014 3:17 PM (GMT 0)
I first started showing signs for UC around Christmas 2011. In March 2012, I was in fact diagnosed with UC. I've been to 3 different doctors. Tried just about every medicine out there. I'm currently on 150mg of Azasan, 1200mg of Delzicol x3 and Humira Pen. My next medicine trial is Remicade, which will replace the Humira. I believe she'll take me off the other two as well. So of the 31 months that I have been experiencing this, I have had 5 months total of remission (not all at once).

My current scenario:
cramping
pain throughout mid-section
15+ BM's a day of bloody mucus (which I'm pretty sure I have toilet bowl bottom's disease (totally made that up))
weakness and fatigue
off balance
03 Aug marked tenth day straight of fever more than 101
loss of appetite, and with that, weight loss

I was recently in the hospital for the fever. Blood work, urinalysis and CT Scan were performed and came back normal. Was given 2 antibiotics: Metronidazole and Ciprofloxacin. This disease is taking control of my life. I've taken an extended (unpaid) leave of absence from work (which was only about 15 hours per week). I'm generally a stay at home father of 2 girls that I cannot give my full attention to because I haven't the energy to try to keep up. This disease has thrown a few wrenches in the relationship with my wife. She's sticking with me 100% (bless her heart) but it's challenging. I have woken up, just completely broken down because I cannot enjoy spending the time with my loved ones, cannot enjoy a day on the boat or beach, cannot sit through a movie or what have you.

I ask this very serious question that I have been talking to my wife and other family members about. When is it time to give up and do the surgery? I want my life back.
Posted 8/4/2014 4:10 PM (GMT 0)
I understand exactly how you're feeling. I was one who thought I'd never get the surgery. I tried everything. When Remicaid, then Humira, then Simponi all failed to help, and I continued getting worse, and started having frequent accidents, I waved the white flag.

I've had my permanent ileostomy just over six weeks. I have my life back. I go out to eat and then somewhere else, not right home. This weekend we drove 3 hours to visit our daughter, no stops.....and left for the drive home after a big dinner. I go where I want, when I want. No fear of being stuck in traffic. No mapping out where every bathroom is. Every now and then I cry...because I'm so happy. I can't believe all of the wonderful things I am able to do now. I take NO medications. I'll never have to have another colonoscopy. I no longer have a fear of colon cancer.

Everyone keeps telling me that I look different, that I'm glowing. Of course I look different...so much stress has been removed from my life!!! I was never relaxed. How could I be when I was always worried about making it to the toilet in time and I was always in pain??
My life is so much better, and I'm not even fully recovered yet!

Of course you need to make the decision that is right for you. I don't regret mine. It's one of the best things I've ever done.

Ps. I thought having this bag would be horrible but it turned out to be not a very big deal. :-)
Posted 8/4/2014 4:13 PM (GMT 0)
Most of the people who have had surgery only wish that they had surgery sooner, myself being one of them. I recently had a j-pouch surgery (3-steps), it took me 9 months to complete. The surgeries were tough but it was well worth it.

I haven't felt this well since I was diagnosed with UC.

Maybe you should have a consultation with a surgeon, it doesn't mean that you have to have surgery but you are getting information on your options.

I am medicine free now and my energy is starting to return.
Posted 8/4/2014 4:27 PM (GMT 0)

CarenZ said...

Ps. I thought having this bag would be horrible but it turned out to be not a very big deal. :-)

I liked having a bag too, I woke up from surgery with a bag and I felt better, the diseased colon was finally out of me. My plan from the beginning was always to have a j-pouch so I needed 2 more surgeries after my colon was removed.

P.S. I liked Remicade, it worked really well for me for about 4 years until it didn't and Humira & Simponi never worked for me.
Posted 8/4/2014 4:46 PM (GMT 0)
For me it was about quality of life. I had zero. My kids were young at the time I was dealing with UC and I missed so much because of that stupid disease. I woke up one morning and knew I couldn't live another day with UC. I was totally disgusted and fed up. I opted for j pouch surgery four years ago and it's been a God send. It was probably one of the hardest things I will ever have to go through (who knows what the future holds though) but the end result has been so worth it.

It's a tough decision that needs much thought and consideration. You also need a highly skilled surgeon who knows their stuff if you opt for j pouch surgery. It's an extremely complex procedure. Best of luck.
Posted 8/4/2014 4:53 PM (GMT 0)
Since you said "I want my life back," I'd say you're pretty much ready. I think it'd be worthwhile to consult a surgeon or two.
Posted 8/4/2014 4:58 PM (GMT 0)
Surgery is NOT giving up! When your quality of life is zero, it is getting your life back. Like others, I just wish I had done it sooner - I suffered for more than a decade without even realizing what options I had.
Posted 8/8/2014 2:59 PM (GMT 0)
Thank you to everyone that replied. I feel like with this worsening disease, I'm just losing hope. It's just so hard for me to get around. Needing to keep tabs on bathrooms. There's a rule in my house that both bathrooms cannot be occupied at the same time. My joint pain has really gotten the best of me. I'm pretty sure my mind is made up to do the surgery. My wife and I were talking about life with a bag. Is it safe to swim, or would I be water restricted? How is physical life? Obviously I won't be playing hockey. When moving in a few years, would I be able to help or am I limited?
Posted 8/8/2014 3:08 PM (GMT 0)
As far as I know, there are no physical limitations just because you have an ostomy, and I know that you're able to swim.

Also, are you aware that there is a procedure (j-pouch) that allows you to NOT have an ostomy?
Posted 8/8/2014 4:19 PM (GMT 0)
I lost 2 years of my life battling a chronic flare; I opted for surgery because I wanted my life back; that was 14 years ago. I have never regretted the surgery decision and have been healthy, off meds, and eat whatever I want, ever since then.

Sue
Posted 8/8/2014 4:25 PM (GMT 0)
I'm at year 9 of this. I had a couple of years at the beginning that imuran worked. I've had more bad years than good. I'm slowly starting to get my head around the idea of surgery.
Posted 8/8/2014 4:54 PM (GMT 0)

bleurabbit7 said...
Thank you to everyone that replied. I feel like with this worsening disease, I'm just losing hope. It's just so hard for me to get around. Needing to keep tabs on bathrooms. There's a rule in my house that both bathrooms cannot be occupied at the same time. My joint pain has really gotten the best of me. I'm pretty sure my mind is made up to do the surgery. My wife and I were talking about life with a bag. Is it safe to swim, or would I be water restricted? How is physical life? Obviously I won't be playing hockey. When moving in a few years, would I be able to help or am I limited?

If you're a candidate, would you consider having the j pouch procedure? You would have a temporary ileostomy in between surgeries to heal.

If you'd rather have a permanent ostomy, you wouldn't have any limitations. (Same with a jpouch) You can swim and play sports. They make special belts that protect your stoma and bag. Once you're healed from the surgery, you can carry on with life as you did. The only difference will be that you'll be healthy! :)
Posted 8/8/2014 5:09 PM (GMT 0)
When someone is mentally at wits end and not getting any better I often recommend surgery to put this wretched disease behind them. In your case however I can't help but think you have gone down the wrong path so far.

Have you ever tried diet changes or mega dose probiotics?

Have you ever tried a different mesalamine other than Delzicol?

Have you ever tried rectal meds like enemas or suppositories?

You say you have been in remission before. Do you know what you did to get there and do you know why the remissions ended?

I can see they probably put you on those antibiotics due to your fever but often times antibiotics make your condition worse. It sounds like they just put you on them because they didn't know what else to do. They may not even be helping and may very well be making you worse.

Have you been tested for C-Diff?
Posted 8/8/2014 7:10 PM (GMT 0)
You can swim. You can play hockey. You can help move. And you'll feel great doing all of those things!! No limitations!! :-)
Posted 8/8/2014 7:39 PM (GMT 0)

garylouisville said...
When someone is mentally at wits end and not getting any better I often recommend surgery to put this wretched disease behind them. In your case however I can't help but think you have gone down the wrong path so far.

Have you ever tried diet changes or mega dose probiotics?

Have you ever tried a different mesalamine other than Delzicol?

Have you ever tried rectal meds like enemas or suppositories?

You say you have been in remission before. Do you know what you did to get there and do you know why the remissions ended?

I can see they probably put you on those antibiotics due to your fever but often times antibiotics make your condition worse. It sounds like they just put you on them because they didn't know what else to do. They may not even be helping and may very well be making you worse.

Have you been tested for C-Diff?


I have been put on a low-residue diet. I have been on Lialda, Asacol, Apriso. Also Prednisone, Uceris and Robinul. Canasa suppositories. All of my remission periods were short lived. I was put on the antibiotics before during my last high fever outbreak, at the same time with the switch to Delzicol, I was clear for nearly a month. I'm pretty much spent being a guinea pig of medicines. I don't know what the C-diff is so I'm pretty sure I haven't been tested for it.
Posted 8/8/2014 7:56 PM (GMT 0)
You should check with your doctor. It is a real possibility. Almost all UC'rs have been checked for C-Diff at one time or another.
Posted 8/8/2014 9:43 PM (GMT 0)
     Bleurabbit, I don't normally frequent this forum anymore, but, just happened to stop by.  I suffered with ulcerative proctitis for twelve years before having surgery in 2010.  I believe when you feel ready for surgery, you're ready!  There comes a point when the meds do nothing..oh yes...they did...they were killing me faster than the disease.  My GI doctor refused to send me to a surgeon.  I think I was his prime guinea pig.  I found my surgeon online, researched his credentials and decided he was the one for me. 

     I had a total colectomy with end ileostomy on June 28, 2010.  I was so sick my surgeon told me I was too high a risk for j-pouch.  Honestly, I didn't care....I was just so sick of being sick.  My quality of life sucked.  When you start missing important events in life because of the disease, when you have to have port a pots in every room of the house because you can't make it to the bathroom...it's time.  I was 63 yrs old at the time of my operation.  I am now just a few days short of celebrating my 68th birthday.  Last Friday night I attended my 50th high school reunion and had a blast!  We are expecting the arrival of our 3rd grandchild any day...events that I know, had I not had the operation, I would not be here to celebrate.

     So, go with your gut...no pun intended.    Surgery was not a walk in the park for me.  It was a long recovery because I was so sick, but oh so worth it!!!  Life is beautiful and to be lived and enjoyed.  God bless.

Posted 8/8/2014 10:58 PM (GMT 0)
You'll know when it's time... ditto everything CarenZ said- I get comments all the time now "You look SO great!"... even I feel like a new person, like 10 years has been subtracted from me. You can swim, play hockey, eat whatever, seriously NEVER worry about a bathroom (well, never more than a "normal" person!)... you don't need any special belts or anything- some people use them, some don't. I got to the point where the meds were taking a toll on me, as much as the UC. I was tired, of everything- the UC, life, crapping all the time, thinking about bathrooms ALL the time, never doing anything- no hikes, no beach days, even a dinner out would strike fear in my heart. I have a perm ileo- could not be happier. It's not gross, it doesn't smell, no one knows, I wear the same clothes as before, my sex life has totally jump-started, I drink beer/wine/coffee, it takes me barely 10 minutes in the bathroom to empty the bag, which I do about 4-6 times a day. I sleep thru the night, every night. No depends, no port-a-potty in my car. It's nice, life is, now. I dealt with UC for about 12 years, & that was it, could not stand it one more minute. I truly cannot say one negative thing about my surgery.
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