Update

[Jeff D.]

So today I went to see my GI. I've finally come to the conclusion that I'm going to need a colostomy sooner rather than later and I rather have the colostomy done by some of the best surgeons in the country at Vandy rather than at the not so good local hospital so unless I a get a miracle I'm probably going to be having a temporary colostomy done this summer.

I'm going in a few weeks to see the colorectal surgeon and he'll most likely agree with me as he already wanted to slice and dice me last time I saw him. I think I've finally come to terms with everything and I just can't wait to get it over and done with and be done with the pain part of the recovery.

Thanks for reading, I'll probably be asking more and more questions about it as time grows near.

Jeff

 

[Lydia]

I had a colostomy for 6 months. Its really not so bad. You dont have to empty it nearly as much as an illeostomy from what I have heard. I only emptied mine like once or twice a day, 3 times tops. Once you get the hang of it, its really easy. I even dated when I had it and the one guy I was dating at the time didnt care at all. I went camping and did some other fun suff too. So life does go on with a colostomy. I hope you get yours back. If its what you want then you really may need it.

At least you have some time to mentally prepare. Mine was an emergency and I spent the first couple months feeling really sorry for myself.

 

[Jeff D.]

Thanks. I have a pretty good life right now but it does suck that I can't ride bikes anymore and that I feel like I constantly have to go to the bathroom. I'm glad that I have a chance like you said to prepare mentally for it although my mind is my worst enemy.lol

 

[kasper87]

Sup jeff. Don't feel bad bro. I go see my surgeon tomorrow. Recommended by my G.I. Whos also top 5 in the nation. Dr. David Rubin. Hes going to give me insight, and see what he has to say. How the surgery is going to be performed. And what will be done.

Ill post tomorrow and let you know what he says.

 

[Jeff D.]

Thanks man. I don't feel too bad just mostly worried how bad the pain is going to be post-op. I think I'm more worried about that pain then having to deal with the thing for the next few years.

Good luck tomorrow.

 

[Lydia]

Dont be afraid to ask for pain control. I had a lil morphine machine and they gave me other stuff on top of that. The pain is pretty tough but managable. I found moving as soon as I could, helped recovery. Walk as often as you can handle. It gets your circulation and you guts going and helps recovery.

 

[Jeff D.]

Thanks Lydia, I'll definitely remember that. I'm usually such a bad patient when it comes to things like this.haha

 

[Jeff D.]

Yeah, before I was dx'd I would take a bite of food keel over in agony and tell my parents I'm okay and it's just phase.lol That's probably the reason I have so much scarring today though so I'm going to try and be a better patient.

Yeah, I'm going to talk as much as I can to get the surgery done laporoscopically. I don't want a large hole.

 

[misscris]

I remember thinking my nurse was crazy when she told me to walk right away too. hehe

Jeff, I'm sorry to hear you'll have to go this route. I know it will probably be a good thing for you to do though. Like you said, might as well get it done by the GOOD surgeon while you can. I don't have a colostomy, almost did, but a lot of people on here obviously have had them or do have them and they seem happy with their decision.

I wish you the best for sure! Keep us updated in your progress.

 

[Jeff D.]

Thanks misscris, I'll definitely be keeping ya'll updated. Thanks for all the help. You guys are awesome!

 

[Rose City]

I haven't had this procedure done but I can suggest you ask for Dilaudid. Request it by name :roflanim:

If you have Dilaudid and a self-controlled pump I assure you will be pain free!

 

[Rob]

Good luck Jeff hope it all goes well for ya

I had a meeting today with a surgeon that my specialist organized

Turns out a colonoscopy is off the cards for me and I'll need a illostomy instead if I end up having surgery, so I'm hopin this new drug I'm on works

if I need surgery I'd rather it a colonoscopy like ur too hav
best of luck buddy

 

[beth]

Good luck Jeff.

 

[Crohn's 35]

Oh Jeff, I feel for ya. I know you are in a state of "why" and feel kinda numb, hard to wrap your head around it. I don't have the same problems you do but we all wonder some day if we are going to have to have a colostomy. But, you have to think of long term and your future. You have come such a long way since I have joined the forum and I see you getting tougher everyday! You are so young and have a bright future ahead of you, and I know it will only get better.

You know I am always in your corner, I am always there for you! Big hugs, and let us know what happens ok! Muah.

 

[Nyx]

Hi Jeff, we've spoken about this already, so if I sound like a broken record, sorry!! Don't worry too much about the pain, as many have mentioned, there are many options for pain management. I had IV demerol and gravol, and didn't need it after a week. I also agree with the others, get up and walk asap even though you won't want to (I know I didn't! I thought they were crazy to get me out of bed too!!). Ask your surgeon about blood clots too, as I developed 2 of them during my surgery and am still on meds now to try and get rid of them. I think there are measures you can take to prevent them.

If you have any questions about the colostomy, feel free to message me...I'm not shy talking about Oscar

Good luck...you'll do fine!!

 

[Lydia]

Oh there are these tights they can put over your legs to prevent blood clots. I didnt have them for my first surgery but I used them for the second. They also gave me this thingie called a spirometer to breathe into 3-4 times a day to make sure I was excersising my lungs. I wish I would have used it more because my breathing muscles got weak and I woul get this horrible stitch everytime I laughed for a couple months afterward.

 

[Astra]

Hi Jeff

Don't really know you, but seen you around, not got your problems, not yet anyway, but wanted to say good luck, and cos you're a young un, this hopefully will change your life for the better, quality wise!
xxx

 

[Agent X20]

Good luck, Jeff
Hope everything works out for the best.

If they put you on morphine after the op try and resist the temptation to phone up all your friends

 

[Nyx]

[email protected] did that first time I was in the hospital...called everyone I knew and don't remember it at all! Apparently I was quite the TMI Queen! lol

 

[Jer's Girl]

Hi Jeff. Looks like I will be in a similar boat as I am getting an illostomy in the next few weeks (don't have my actual date yet). I hope all goes well for you and that you have a swift recovery.

 

[farm]

It'll all work out for the best Jeff.

 

[Jennjenn]

I hope all goes well for you Jeff. I am sorry that it has come to you needing the surgery. About the pain just make sure you have someone to be your advocate in the hospital (like family). I had the first surgery the resection and had the morphine pump and some dilaudid (yes dilaudid takes away pain!! and makes you a bit loopy and say some silly things! Once when I was on dilaudid I told a few people I wanted to join the army when I recovered so they can pay off my student loans....if you knew me you would lol also like they did!) but for a lot of colostomy, ileostomy, and resection surgeries unless you ask for more help they usually stick with the morphine pump. A week after the resection and was still in the hospital I had the emergency surgery and woke up with a surprising temporary ileostomy. My mother had to fight for me to get more pain meds with a pain management team. I was so out of it from having the 2 surgeries so close together and they put me on a mixture of morphine, methadone, and toperol with later some dilaudid. Once I got that I was comfortable. If it were not for my mother though it would not have happened bec I couldnt speak up I was too weak. Then they reversed it 5 weeks later and I refused pain meds after the 2cnd day just to get my system going again by walking. They will tell you to walk and walk, even if you dont feel like it, it will help you. I pray for the best for you and hope everything works out well.

 

[Jeff D.]

Thanks guys. I've been out of town the past few days and it's such a joy to read of all of ya'lls support. You guys have taken away a lot of my worry by telling me not to worry about the pain. I'm just so annoyed right now about how my rectum is. It's so annoying. I almost can't wait to have the surgery done. Well, now I just have to wait until April 19th to find out when I can have the surgery. It's probsbly going to have to wait until the end of May at the earliest.

Thanks so much for all the support, ya'll are awesome

 

[teeny5]

Good luck Jeff. Keep us posted.

 

[Jeff D.]

Definitely will do

 

[Tan]

Good luck Jeff, I hope all goes well with the surgery and you have a speedy recovery and it changes your life!

 

[Jeff D.]

Thanks, I'm actually looking forward to it now. I'll be praying for all you guys.