Considering surgery

No regrets here. Wish I would have done it years sooner!

I have a j pouch not a permanent ileostomy and no regrets here at all. It gave me my life back! :)

I guess it really depends on what your current quality of life is like...my husband has been dealing with Crohns for 18 years with the last 3 years being yell. He had surgery 10/11 and now has permanent ileostomy and data everyday how happy he is that he got the surgery.

Prior to the surgery, he was always laying down in pain with chills and fevers, going to the bathroom 20-30 times a day. No social life and no quality of life.

This weekend: Orange County fair, ate hot dogs, funnel cake, corn on the cob, games and walked around all day, gym, more good healthy food and ENJOY all weekend with our 2 year old daughter!

I can't tell you as a wife of someone with Crohns, how different life is...I spent a lot of time with my husband before,l...but I spend more quality time now making memories...

Btw, he's 34 years old

My son was almost 2 and he was my main reason for chosing surgery. I couldn't face missing anymore of his life! And it has amazed me how even a stupid thing like being able to sit in car line to pick him up makes me grateful, or to taking him to the store. Not to mention the other stuff we have been able to do! We have taken him to 5 other countries, taken him to Disney, gone to the mountains on a moments notice. All the things I think healthy people take for granted!

Butterfly you certainly sound like you have reached that point of "being sick and tired" of being sick and tired.

Ditto to the above posts...so many of them are exactly what my husband went through and ABSOLUTELY would have had it done 2-3 years sooner had he known how much better he would feel and get quality of life back.

Once you go through the healing and convalescing and maybe some trial and error gettng the right appliance and getting the hang of things, you will be much happier and healthier.

Most importantly be sure you are getting an EXCELLENT colorectal surgeon and you wear your normal type of slacks/jeans that you like to wear so your stoma can be marked accordingly to take that into account.

Best of luck, This forum has many threads with tons of info. If you haven't had the chance to spend time perusing then do so when you have some time. Also research what you can about the pouch (bag) and wafers so you know what to expect beforehand.

butterfly42 said...
Thank you all for all the positive feed back. Im not married so that kinda worries me. I have 3 wonderful boys and have had no quality of life for the last 13 years. I'm always home in bed and close to the toliet. This flare has lasted for 4 months straight and I was even hospitalized. I'm wearing depends because I cant even make it to the toliet, and I'm going 15 to 20 times a day and night. I'm very depressed, and want my life back. My youngest sin is 13 and I'm missing out on so much of his life. I miss going camping going to the beach, all the things my boys have to do without me now. I feel like I just exist. Thank you again for all your positive feed back, means more to me than you'll ever know. I'm definently going to talk to my dr about the surgery. God bless you all!

My kids were little at the time of my worst UC flares so I missed out on so much with them. I wish I hadn't waited so long. I was in the bathroom 20x plus a day too and it's no way to live. And I had to wear Depends as well. Time to get your life back! :)

My husband lived with the initial minor inconveniences for awhile and that was his normal and learned how to cope and adjust.

When he got really ill we were retired so in a way he was fortunate not dealing with the additional burden so many have trying to hold down a job, go to school, raise children etc. He said time and time again he just did not know how you all handle(d) it when it is such a debilitating situation. It definitely curtailed our social life overall and was not fun. Not fun for the pain and suffering he was enduring, not fun watching it and being so helpless and unable to help and we were at a time in our lives we had all the time in the world to be enjoying life and he was essentially a recluse. It was easier to just stay home, live in sweats and know the toilet was nearby. Horrible when we had to go out somewhere most times which was essentially just important Dr appts. Finally asked me to get him some depends just so he had that security when he had to go out he had the protection in the event of an accident that never happened. I think his nerves were calmed down knowing he had those on. Expecially the 3 hr drive up to Mayo Clinic off and on for 3 years. We certainly knew where all the rest stops were and exits for rest rooms if needed.

The day he decided enough was enough with a little pep talk from our local doctor what a weight was lifted off the both of us. We went into research mode and absorbed as much info as we could to be prepared and it took all the unknown and apprenension away. We knew nothing about "the bag" or stomas and had such fear about it all.

Once I hopped over here from the UC forum and devoured all kinds of info and encouragement it helped so very much.

He had hoped for the j pouch and his surgeon tried his absolute best....7 1/2 hr VERY complicated surgery later it was not meant to be even though I knew about 2 hrs into the surgery that it was highly unlikely that he would be able to have it. I was more disappointed initally than my husband was. He has sensitive skin and I was so nervous that we would have nothing but problems. After the initial trial and error and experimenting with different products and advise here and the UOAA forum we are at a point and have been for over a year with a successful arrangement.

Hopefully he will be lucky and not succumb to some of the unusual things that could go wrong. Can't dwell on that and just appreciate every day he has being back to enjoying life once again. Gave me my life back as well. It is a new normal for sure but in comparison to where he was prior to surgery he definitely would do it all over again without a hesitation.

Yesterday I was out and about in a crowded public area and my bag was getting a bit heavy. Went to use the rest room, and the line was really long, so I said I'd wait until we got to a restaurant for dinner.... then we walked around for a half an hour picking a restaurant. Then I put down all my stuff and walked, not ran, to the restroom and emptied my bag.

Here's how that scene looked when I was sick.... well probably I would have been too tired to go out, but if I went out, I would have avoided the crowded area because I knew I might not be able to run to a bathroom, and if not, I'd have been panicking and asking people if I could cut in line and maybe having an accident..... then if I wasn't too tired and changed clothes etc, well I'd have to find a restaurant that would have something I could eat without a long list of foods I was avoiding etc.....

I'm grateful every day that I had the surgery. I had been sick so long that I had lost perspective on how much I was missing out on. It's the most amazing thing in the world to get your health back.... even with complications and bumps in the road etc.

In some ways I wish I had surgery earlier, but in other ways it's good that I waited until I was completely ready.... no regrets at all. I paid up front.

Not one regret other than the fleeting all-to-familiar thought of, "wish I had done it sooner!".  And, most certainly to have NOT developed Crohn's in the first place--but, that was not an option.

I researched high & low so I could make an informed decision and elected to have a proctocolectomy with permanent ileostomy without attempting to even try all the drugs most others have tried before having surgery.

My life was not my own for the last couple of years with my colon.  Chained to the bathroom and the last straw was incontinence [your story hits close to home for me].  I chose surgery and have never once looked back.  I re-claimed my life and you will, too ♥

 

Even though my husband said to his Dr a few days after the surgery he wished he had done it 2-3 years sooner the Dr quickly replied "but you were not ready 2-3 years ago".  Even though it was mentioned and suggested to consider it, it wasn't until his local Dr told him in her professional opinion she felt it wasn't a question of "if" but "when" it would become a cancerous situation that would greatly complicate things further.  That resonated on the spot with him and he made up his mind right there and then....he said "it's time".

Each one has to come to the decision (if lucky enough not to have a spontaneous medical emergency situation) when it is right for them I feel.  This way you are the one in control and not being forced to make up your mind if you are not ready.

I had UC for ten years. I had a lot of constant pain and bleeding with my disease, and a few bad flares over the years, but mostly I managed okay. I would have never thought I would one day face surgery. Then I fell into a severe flare out of the blue in the fall of 2010 that landed me in the hospital for two weeks. I lost tons of weight and became severely ill, and the doctors gave me the options of Remicade or surgery. I never wanted to be on a strong biologic for the rest of my life, and decided I wanted a permanent ileostomy. I did try Remicade to heal me up and avoid surgery in an emergency state when I was so sick and weak, but the drug gave me excruciating joint pain. I ended up getting surgery a month later, and I have never looked back. I am soooo happy with my decision. Once my sick colon was out of my body, I realized how much it had been dragging me down with pain and fatigue all those years. Now I feel great and have energy again. My ostomy has not stopped me from doing anything-- I run, backpack, rock climb, do yoga and snowboard. Having surgery was one of the best decisions I have ever made.

I agree with bdereh..it is so important to find a good surgeon that has done thus many many times and is caring enough to listen to their patients. UC Irvine Medical Center is a teaching hospital and has a fabulous gastroenterology department. Of course Los Angeles cedar senai hospital, UCLA hospital is great too. I don't know any specific Dr. In LA, but know that Dr Steven Mills that did my hubby's surgery is amazing.....good luck!!