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Scared out of my mind now I need surgery

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Ulcerative Colitis
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Posted 9/21/2014 2:35 AM (GMT 0)
confused smhair Hello, this is my first post. I am 48 years old and I am a former competitive powerlifter that has had UC ruin my current life. I have had UC get progressively worse over the last 2 years. I was given Remicade treatments every 4 weeks along with 6 mercap and prednisone. I had to go on disability from teaching school after having an average of 20 bowel movements a day.

Last week I had a case of kidney stones that hospitalized my. During the Catscan, a potential cancerous region was identified. I had an emergency colonoscopy and my doctor said that, before even reviewing the biopsy, that my colon has to come out. Holy crap! Now I need J pouch surgery. I wrote this to point out that not only am I scared for myself but anyone with inflammatory bowel disease needs to treat it seriously
Posted 9/21/2014 3:15 AM (GMT 0)
I hear you. I’m 48 too and will be having surgery this Monday. I’ve had UC for about six years. Last few scopes showed dysplasia. I’m having an ileostomy instead of a j-pouch because I have strictures which could indicate Crohns instead of UC. I suggest finding the best surgeon you can. A lot of people have done well with surgery, both ileo’s and j-pouches.
Posted 9/21/2014 5:20 AM (GMT 0)

brt4545 said...
I hear you. I’m 48 too and will be having surgery this Monday. I’ve had UC for about six years. Last few scopes showed dysplasia. I’m having an ileostomy instead of a j-pouch because I have strictures which could indicate Crohns instead of UC. I suggest finding the best surgeon you can. A lot of people have done well with surgery, both ileo’s and j-pouches.

I will be thinking of you this Monday as I will be going for a quick surgery for removing kidney stones. could we follow up on you to check on your progress? I know emotions must be swirling through your head and all I can do is offer you support.
Posted 9/21/2014 1:28 PM (GMT 0)
So sorry. I had J pouch surgery 4 years ago (at age 41) because of severe UC that could not be controlled. It's been smooth sailing ever since. I was scared to death too but it was a blessing in disguise. It was a rough time getting thru the surgeries but in the grand scheme of things, it was such a small blip on the radar map. You will get thru this! I love my j pouch and the fact that it gave me my life back. Were your cancer results negative or are you still waiting?
Posted 9/21/2014 2:11 PM (GMT 0)
welcome john boy - sorry for your situation - doesn't sound like fun at all :-(

just curious - what are your current symptoms and what is your quality of life - I mean even if the C word wasn't on the table, have you had thoughts regarding your plumbing removal before this ?

I would certainly encourage you to get a second opinion if you haven't already -
Posted 9/21/2014 2:11 PM (GMT 0)
I am sorry to hear you're going through this and I wish you the best in your road to recovery. You will see when you read here, a lot of people have had really good experiences with surgery so I will be hoping that you are one of those people. Perhaps it will give you a renewed ability to get back to your old self and do powerlifting and no longer worry about UC issues. It is completely possible.

Please post back and let us know how you're both doing.
Posted 9/21/2014 4:52 PM (GMT 0)
I am so sorry to read this. This disease is very difficult. I'm going to have surgery this week for my ulcerative colitis, except I'm opting for a permanent ileostomy. I'm terrified as well. I wish you the best of luck and let us know how it goes.
Posted 9/21/2014 7:11 PM (GMT 0)
Bye bye, I will have the cancer results by thurs. Thank you for posting your encouragement.

Soy, Most people would never know I had it as I still look like a big strong guy. Yet my students at my high school used to get upset when I had to run to the bathroom. They knew I was hurting. I had to leave teaching this year. I can't travel as I have diarrhea constantly, I mean 25 times a day. It puts a strain on everything. I have soiled myself while driving 5 times in September alone. I have anxiety and depression.

BT and annadee, I wish you the best this week. I wish I could be there for you as you have your surgery and I will be thinking of both of you.
Posted 9/21/2014 7:39 PM (GMT 0)
So sorry to hear all you are going through. Just wanted to pop in and say that I was also a competitive powerlifter when I was diagnosed, was on disability for a while, but surgery was the best thing that ever happened to me (at least having to do with UC). I made a full recovery and I'm even lifting again. As scary as surgery is, the vast, vast majority of surgery patients end up with a much better quality of life than what you're tolerating right now. It can and almost definitely WILL get better. It's not easy but the results are worth it. Good luck
Posted 9/21/2014 8:01 PM (GMT 0)

johnlamb said...
Bye bye, I will have the cancer results by thurs. Thank you for posting your encouragement.

Prayers for a negative result. Will be thinking of you.

brt454 and annadee-Good luck with your surgeries. Will be thinking of you as well.
Posted 9/25/2014 2:06 AM (GMT 0)
I just found out I have NO cancer. That is one relief
Posted 9/25/2014 3:12 AM (GMT 0)
awesome -
Posted 9/25/2014 11:52 AM (GMT 0)
Awesome on it not being cancer. Hey, it's all about quality of life. If you are having frequent accidents, diarrhea 25 times a day, and on disability due to it, then why is surgery such a scary outcome? I've been there and had accidents while driving, at work, at the grocery store so I get it and I've been at 20bms a day as well. Whereas with a jpouch you would poop 4-6 times a day without urgency, you can hold it 30 minutes or more. To me, right there that seems like a huge improvement in quality of life. I was understand it's a major surgery and it carries risks. But 95% of patients are happy with their jpouch outcome and many wished they had done it sooner. Whether or not you need surgery is up to you and your gi to decide. However, surgery can be a blessing to many.

I don't know your whole history. Have you done iv steroids to try to get this uc flareup under control? Have you considered entvyio if remicade has failed you? There might still be treatment options available, it depends on your will to fight on, and the time you wish to suffer uc symptoms while trying things that might take months... forbme it was remicade there might be something else that works for you.
Posted 9/25/2014 12:51 PM (GMT 0)
Your story sounds a lot like mine. I was very ill for several years, functioned as best as I could. I failed every treatment that I tried (Lialda, 6mp, Mercaptopurine, Remicade, Imuran, Cimzia, etc). I didn't want surgery and fought it for a few years until I became so ill that they did an emergency total colectomy. At the time I was diagnosed with Crohn's, was 24 years old, and didn't want an ostomy the rest of my life. The doctor said it was no longer my decision because I was no longer eating or really functioning at all. So they removed my colon. While I was recovering in the hospital, they changed my diagnosis to UC and said I could have the j-pouch and eventually ileostomy reversal once I recovered from that first procedure. It was a long road to recovery. I had the final procedure (ileostomy reversal) just over three years ago and am happier and healthier than ever. Every year, I send that doctor a "thank you" note. At the time I thought he was ruining my life because I had to withdraw from Grad School. It turned my life upside down, but it was the BEST decision that I never would have made. I am no longer on any medication for my UC. I am active and can live a wonderful life. I've had difficulties controlling my output. I still have an accident once in a while and still go to the bathroom 6-10x daily. But there's no comparing it to UC. I don't have the pain and urgency that I had with UC. I just started a medication called Opium to help control my small intestine a little bit more so I'm not going to the bathroom as frequently. I will probably never have a regular BM so I'm learning to live with my new normal. But I wouldn't trade it for anything. I understand where you are and know how scary surgery is. I get it 110%. As someone who has been on both sides of it, I can tell you without hesitation that if I knew then what I know now, I would have had the surgery a lot sooner. Best wishes to you! Please keep us posted!
Posted 9/25/2014 1:00 PM (GMT 0)
John-Awesome news it's not cancer. Wishing you good luck with your surgery!
Posted 9/25/2014 4:32 PM (GMT 0)
Glad to hear your test came back negative.
Posted 9/25/2014 6:33 PM (GMT 0)
Considering your more active preferred lifestyle you may want to look into permanent ileostomy instead of going through all the surgeries for an internal pouch. Just a thought. Check out Ostomy Outdoors and Blake Beckford. Very inspiring stories of active people choosing the ileostomy.

Lucky for us - once we get our colons out - no chance for cancer in them anymore! :D

You will love having your life back and not being glued to the toilet.
I empty about 5 times all day/night. Usually when I pee.

Its heaven compared to 15+!!

:)
Posted 9/25/2014 7:00 PM (GMT 0)
Embers,

Don't you have to be careful of hernias with an ostomy? Mine was only temporary and I was recovering from surgeries during that time but the doctors and surgeons were always checking me for hernias when I had my ostomy. If that is the case then I'd think powerlifting might be an issue with an ostomy.

I enjoy not having a colon, I just feel so much better now. I can sleep through the night without needing to get up, I have about 5 bms a day.
Posted 9/25/2014 7:22 PM (GMT 0)

johnlamb said...
I just found out I have NO cancer. That is one relief

That's terrific news. Thanks for the update.
Posted 9/26/2014 4:28 AM (GMT 0)
There are power lifters with ostomies :)

Of course you can't right away. But with proper form and care - you can do just about anything.

Now powerlifting with a faulty pouch? That sounds like a potentially "sh!tty" situation... ahahaha - im funny.
Posted 9/27/2014 2:19 AM (GMT 0)
You guys have all been such an inspiration. I just talked to my GI and they said since I did not have cancer, they wanted to get my kidney stone surgeries out of the way and let me recover. After reading all of those that have had jpouch's, I am looking forwards to recapturing my life. I actually went to a psychiatrist yesterday and he discussed with me that I have anger and anxiety and that may be the real scare in getting the surgery. Your mind is the most potent opponent. I am so glad I found this site and I just started going to a support group for Crohn's and Colitis. I grew up with the macho manly mentality of Chicago. Now I wish that I could hug all of you. it is weird that an illness can change you into a better more caring person. Thank you all!
Posted 9/27/2014 3:39 AM (GMT 0)
glad you're going in a positive direction mr john - but pleeeez, i hug my kid a lot, my wife sometimes, but whoaaaaa on the bro huggin - nothing personal, just how I roll ;-)

besides, i'm kinda old and frail -

hope the stone extraction goes well :-)
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