Thinking of getting an ostomy...

Brief history:

Family history of UC and CD (thanks mom & dad!) I've had IBS then IBD for 27 years.

I have not worked in years. I have no kids. Just my 80 yr mom with an ostomy.

I'm burnt out. Fistulas have sent me over the edge to the point of wanting to die. These last 7 months have been utter hell. I just had 2 draining setons placed last Wed and have a rvf as well. My surgeon won't do a temp ileo if I'm not passing stool through vagina. My bowel is pretty decent going from 0-4 times a day, all normal but urgency plagues me. 5-6 if I eat gluten. I'm as close to remission as I have been in years but still too sick to just get up and go off to work without worrying about my bowel and pooping myself. It's taken a quadruple weekly dose of humira to get me here. My fistulas showed improvement but suddenly opened up again. My GI is now thinking of switching me to stelara even though there's no evidence to support how it would work to heal them.

I'm beyond tired, pale and sickly looking. I have had some days of joy but my bowel rules my mind. I'm ticked beyond belief that CD has infected my lady bits and now has taken control of that. No sex, no menstral cups....not even a tampon. I cry all the time. ALL the time. My self esteem is shot. I have scars from pyoderma and now I'm sporting smurf blue elastic bands from my butt. I've lost my business, colleagues and most friends.

I don't know if I've given up by getting an ostomy. Does that mean that the disease has won? Will I be giving up the fight? I want off all these meds yet so many of you with ostomies are still on biologics. I'm assuming I'd need my rectum and anus gone as well. I'm tired of so many doctors appointments.

I have one thing left on my bucket list: Italy. How can ever go?

I spoke with my mom about it today. I was expecting her to say that I should go get it done and salvage life. I could be on a plane to Italy by the summer. Instead she told me that she empties her bag 3 times a night and 5 times day. Her bag bursts frequently. When she was so weak on chemo last year it was terrible for her. No one else can change bag etc. Yet her QOL is so much better than mine. She's travelled and eats and shops and has so many friends her phone doesn't stop.

I;ve looked at myself in the mirror wondering what it would be like. I've emailed the TIES doctors and apparently that device is contraindicated with fistulas, but I think i'd still try that. It makes the surgery more palatable to have an internal cup as opposed to bag. Still it's 2 years away from a reality.

Is simply being tired of it all a reason to get an ostomy? Is the risk of PG returning too great?

I'm so vibrant and smart and lovely but my bowel rules. If I had a bag i'm assuming I'd get up, empty and go to work or to ballet or hike and not worry. Is this correct?

Am I a failure or just giving up?

Thank you. sniff. sniff.

UB,

No you are not a failure. You are not giving up. You are researching what is the best path for you.

Are you passing stool thru your RVF? Does your RVF have to be cleaned several times a day? I ask because those were questions my colorectal surgeon first asked. My answers were yes but we still had to wait. No operation until I got the stricture. They said it was too dangerous and that people with severe fistulizing Crohns usually developed additional issues after surgery.

I have a colostomy. I empty my bag 3 - 10 times a day. I usually don't have to empty it at night more than once. They left a small amount of my sigmoid and all my anus/rectum. They stated there may one day be the possibility of reconnecting me. They also advised me that I should stay on Remicade or other medications to prevent flares from occurring anywhere else as severe fistulizing Crohns can impact us differently than from regular Crohns...and to remember that with any Crohns we can be impacted from our mouth to our anus. I didn't ask many questions cause I was in too much pain from the stricture. I believe I was just begging them to take it out by that time...

2 years ago our neighbor passed away when the Crohns came back in his mouth, then throat and finally stomach. He stopped taking his meds because he was in remission and thought that once he had a flare the meds would stop it. Nothing stopped his flare and he was gone in months.... I have another friend that stopped her meds and she has had zero issues. I don't think I will stop taking my meds until there is a cure just to be safe. But that is just me. It is a decision you and your doctors will have to make.

You have not given up if you have an Ostomy. The disease is something that happened. It is not a race or an event with winners or losers. It is something that all of us must learn to deal with in the best way possible for ourselves. It is different for everyone.

My doctor did tell me to forget about TIES....not going to happen. Not with Crohns. So I have taken that off the table for now.

Many life events/reasons go into the decision to have an Ostomy. The PG is a real concern. I would definitely speak to my GI and colorectal surgeon about it. When I first started out I spoke to 3 colorectal surgeons. I knew which one I was going to use--I just had to have that second opinion..and then I needed that third.

Your Crohns does not go away when you get an Ostomy. You are not cured. You may or may not still have some of your current symptoms or you could develop more or others. It may improve your quality of life. It may not. I have a friend that got an Ostomy. She searched high and low for a doctor that would perform the surgery to improve her quality of life. She discovered she has a very sensitive nose and a strong gag reflex. She has a hard time emptying and changing her bag. (But that is her only issue) I have another friend that had it done and she is out living her life now. I fall in there somewhere. I always believe that tomorrow will be a better day.

So you have NCOT, me...and there will be others....to answer any questions you have. Our answers may be different and that is good. It shows you the many different paths...

You are vibrant, articulate, and lovely. I enjoy your honesty and perspectives. I am sure all your local and online friends feel the same way. Hang in there.

Clo

P.S. My quality of life is better. Living with a bag is what you make of it.

Post Edited (clo2014) : 3/13/2017 2:51:37 PM (GMT-6)

wish like heck i didn't have to say this to you or anyone ever, but .................. just git er done !

it's time - best of luck going forward -

UB Tough...having surgery does NOT mean the disease has won...it means YOU have won. I suffered with ulcerative proctitis twelve years before surgery. My quality of life sucked. I missed weddings, funerals, my grandson's First Holy Communion and the list goes on. We had a porta potty in every room of our house, and we have a rancher, because I could not make it to the bathroom in time. We had a porta pot in our van even if I had to travel to my daughter's house, a 15 minute drive!!! My GI doctor just wanted me to be a guinea pig, take more and more meds...try this biologic, try that biologic. The meds, especially prednisone because I had become dependent on it, were killing me. At age 63 I had my operation. I do have a rectovaginal fistula, but since I don't defecate through my rectum, the surgeon said leave well enough alone. It isn't bothering me except for some mucus and spotting. I was thoroughly checked out by my gyn and, even though they cannot find the fistula, everything is fine. Life is sooooooo much better since my operation. Everyone is different, we have to make our own decisions and you must make yours.

UB Tough - how much can a human being take? You've been through enough...

I don't have Chron's, I had UC...after almost 15 years of living ignorantly, than living on Prednisone in "dreamy" happiness, than searching for a cure, than denying the truth, and then finally having a new GI ask me "What the @#$@!?" I went and had the surgery.

You have a choice, you don't need to suffer anymore.

Best regards!!!

I've been checking the Healingwell posts every day for almost eleven years. The above posts are a collection of the best responses I've ever read.