Feeling very depressed Got the word last tuesday about reconnection

[joshuahoye]

The call from the Surgen, the one i didnt want to recieve...

.............. Well... After waiting all day, wondering what was going on, i recived the call from my surgen..... I shouldnt have been so shocked at what he had to say, just because i know that i dont have the ability to get good news about my health... He said that with the tests that were done yesterday he cannot forsee me having the ability to have proper function of the nessecery internal parts needed to remove the bag...ever.... He said that the part in question is too inflamed and scared that even if i was to get back on the injections that i was reciving before the surgerys last september they would not have the healing effect needed to reconnect me.. I asked him if this was the end of the line and he said yes..... He told me that there is one last option, but it has never been done in the states only over seas, and with the data they have it is a very dangerous/complicated procedure.... He told me that if i wanted to get second opinions he would give me names and numbers of other surgens in the boston area or others in the states... He was kinda hinting that he wants to go in and remove the part in question because of its status, but if he does that and some type of breakthru occurs(which i dont see happining) id be screwed because thered be nothing to connect to... But iam going to end this message due to it upsetting me worse... i will talk to everyone soon.. Thanks for all your support...If i seem down and not to happy, not being myself, you know why..... Josh:depressed:

 

[tonya_n_ky]

Aww Hugzzzz to you and I'm sorry to hear that you got bad news back. I'll be thinking about ya and I hope that if not right now that somewhere down the line things will work out. Sometimes things aren't what we want to hear but later it turns into a blessing. Try to keep your chin up and stay strong. We're all here for ya ~ Tonya

 

[Jeff D.]

Hugs man. Sorry about the bad news. Try stay positive as much as possible.

Best of luck

 

[Cara Fusinato]

Hang in there. We are all praying for you and thinking of you as you deal with the news. We all know devastating news in one form or another, so we are all with you!

 

[Valentina]

really sorry to read this Josh.. I hope that you are able to come to terms with what has happened, or maybe get a second opinion? I know its going to take some time for either one.. so try to stay as upbeat as you can I guess. I cant imagine this is very easy news to have to digest. lots of people here for you if you need it.

 

[Nancy Lee]

Sorry to hear it wasn't better news.
We're all here for you...holding you in thought and prayer.

 

[danika]

I hope it all works out for you, and remember to talk to people about it

 

[joshuahoye]

Still feeling very upset about the news about not being able to be reconnected... everyone in my close circle of friends have been very supportive and helpfull, but even that hasnt snapped me out of it.. everyone makes sure that im not alone because they dont wanna give me the time to let my head wonder.. but when everyone goes to sleep, iam awake and thinking about how i was delt a **** hand with my life.. i know it could be worse and there are people in worse situations but no one in my shoes can ever understand what i deal with on a daily basis! I have come up with a saying about things and everone has said that it is one of the truest things the have ever heard, it is: "Walk a mile in my shoes, I bet you take them off a half a mile into it"! and it is soo true!

Im sorry i forgot to let everyone know what the docs said... Well he said that my rectum is still very inflamed and he says it will never have the ability to perform they way it needs, so he cannot reconnect me.. he said that there is one last option but it has never been done in the USA and id be hard to find a surgen to do it, and if i did find one it would only be because they doc wants the exposure of being the first to perform it..... But there are 3 docs in my area that are resurching everything for me and will let me know once there is more info about it and when they feel comfortable enough to do it.....:depressed:

 

[Jeff D.]

Good luck joshuaoye. I don't know how it feels to get the word that you can't be reconnected but what I do know is how it feels to be depressed. Last year I hated my life, I did not know what to do anymore. Although you seem to have a far more serious case of Crohn's then I you need to find the way you can make you feel happy again. You have to smile and laugh or what ever you need. I learned how much I love poetry, writing/playing music, and excercising. If you feel the need to talk about any problems you are having feel free to pm me and I will talk with you.

I found that Crohn's really helped me learn who I am. You just have to search deep to find it.

Best of luck

By the way,
I want to fly
Like a cold pizza pie
And go to many countries

I like to eat
All places great
And poop comes out

And I cry hooray

For the day
I feel good
Without a weep

I lay in bed
Laughing in my head
To how bad that poem was

 

[DannyB]

Hey Joshuaouye,

I'm really sorry to hear about your news, I know lots of people who live normal lives dealing with the harshest crap this illness has to offer, having a positive mental attitude helps and you will get there.

I don't know what you have to put up with in life thats true but I know your still alive and have life so life is really what you make of it and how you cope with what it throws in your direction.

Believe it is possible to solve your problem. Tremendous things happen to the believer. So believe the answer will come. It will.

What lies behind us and what lies ahead of us are tiny matters compared to what lives within us.

 

[ruthymg]

Hi Joshua, so sorry to hear your news. I am too waiting for news of my possible reversal op to remove my stoma but need to wait for further tests and a few courses of Remicade first. I know exactly hoe you feel, I consider myself to be young at 32 and was devastated when I was told I was to have major surgery which would leave me with a stoma. I worried about what my family friends and most importantly, how my husband would react to me. Its taken nearly 5 months for me to come to terms with my stoma, I don't like it, never will but having it has saved my life. I used to have problems with leakage but i've sorted that now, I also had problems with clothing that would disguise it but i've almost sorted that too. The only thing that is still a bit of a problem is how I feel about it and I know it will take time to feel fully like the person I was before I had the op. I post messages on another site which is specifically for people with ostomys, young and old and its a fantastic support network, have a look it may help you to feel a little better. Try and look at the positives and not focus too much on the things that get you down. Hope you start to feel better soon, you can always pm me if you need to chat.
Heres the link to the site I was talking about

www.ostomyland.com


Ruth

 

[wi_girl]

I'm sorry.Thats terrible.

 

[Skinsfan1229]

so did he put the air in your rectum to see if it could hold it?

And just because its inflamed NOW doesnt mean it will be in the future. Mine was fine after my ostomy for 2 and a half years, now...inflamed...but that doesnt mean two years from now it will be and I wont be able to reverse. Maybe you need to seek another opinion, dont you believe he's closing the door on your option to reverse in the future, its better to keep your rectum and have the door left open the close it forever.

 

[Skinsfan1229]

i thiink I posted about this on another thread...

Did he blow air into your rectum to see if it could hold it?

Check the other link...or I might merge the two since their similiar.

 

[kissycole_1979]

I am sorry to hear that. That must be hard to have to deal with right now. I will be praying for you.

 

[GNC Crohn's Man]

I hope things work out for you.... Hopefully in a few months you can have your life straightened out and things will be a lot better... For now things are gonna suck... So try to deal with it the best you can and remember were always here if you need to talk...

 

[Micheladelfina]

Josh,

So sorry to hear about your news. Like Ruthymg, I have an ostomy as well; only for about two weeks after an emergency colon resection. When I went for the follow up with the surgeon, he expressed concern about reconnection as well, though for a different reason. I don't have a definite answer yet; hoping to find out in a few months. I can definitely see how even the support of friends and family doesn't necessarily bring you out of the current bleakness you feel. It's wonderful to have their support, but I think I'm finding out from others that it really just takes the proverbial "time" to adjust. I do hope that there is something they can do for you in the future.

 

[skeet]

Aloha Joahua. Been thinking about you and hoping that you're feeling better about yourself and about life in general. Can you update us and let us know how you're doing?

Holding you close in my thoughts.