Numb/Shock...In need of support

Hi. I have been posting mainly on the IBS forum, until now. I am 35-F. Had problems with constipation and bowel incontinence my whole life (nerve damage from Spina Bifida), but I hid it and lived with it until recently. I told NO ONE! Had NO treatment! Finally sought help for it a few months ago, and saw my first GI doc 8 weeks ago. Long story short, he was not at all helpful, and today I went and saw a new GI, at a well-respected teaching hospital. This doc was SO much better, he listened, he understood, he cared. After a long talk with him about my history and present functioning, test results (from 1st GI doc), and a physical exam, he told me his thoughts.

Here is where the "shock" came in for me: He, along with another doc who was involved in the entire appt, said the next step is more testing...manometry? and some other test that they will send me to Mayo Clinic for (because it is not frequently done and is a very specialized test) (I don't remember the name of this test), and the results of those tests will determine whether they remove my colon or not. Either way I will end up with an ostomy. He said my quality of life isn't very good right now (I completely agree), and with the surgery, I could get a lot of my life back. I am overwhelmed.

He seemed like a really great doc, and was recommended by my urologist (who did my bladder augment and created a stoma for me to catheterize thru), so I feel like I can trust him already. Am just really in shock. Up until 2 months ago, this was my secret, I was dealing with it on my own. I figured I'd go to this appt and they'd tell me to try different meds or get more exercise. Never in my wildest dreams did I think I'd be told that I may lose my colon and that I'd have an ostomy. That's only for really really sick people, who have uncontrollable diseases or cancer or something....not me.

I know I have to take this one step/one day at a time, and I have a lot to learn about all this. I guess right now I just really need someone to tell me it's gonna be ok.

Mike is right. It seems really overwhelming at first, but it gets better. I didn't have any advance notice or time to fret about it beforehand, I just came out of a coma without my colon. It was quite a shock! There are issues with not having a colon, but they can be dealt with. They are probably easier to deal with than what you have been dealing with for years. Once the shock wears off and you go through a period of adjustment, life can be better and there are great places like this where you can get support and advice. You are not alone.

Scott

Thanks Scott. I appreciate your positive comments and support. I have a feeling I am going to find not only a lot of information on here, but also a lot of emotional support as well.

Eva, thanks for your response. It's weird to think that an ostomy will be our new "normal". But already I have realized that the people on this forum, who have gone thru/are going thru it, will provide a tremendous amount of support and information that no one else could. Sure, a doctor can tell you all the medical parts and family/friends can try to be supportive, but I think it's so important to have this group of people, who have been in your shoes, can understand your fears and emotions, who can help you learn to live with it because they have been there. I am so thankful to have found this forum.

Although this is all very new to me, I wanted to let you know I will be here to listen and support you in any way that I can. I know you said your surgery isn't until the 14th, but I hope that it goes really well and the healing is just how it should be. I'm sure I will learn a lot from hearing about things as you go thru them, and I appreciate your willingness to share those things. If you want to "talk", let me know. I haven't quite gotten around to putting my info into the "profile" area yet, but will do that asap, so feel free to email me or whatever.

Sunny and Eva Lou you will both be fine. I did just as you are in asking lots of questions, doing endless research and basically talking to my friends and family until I got fed up with the sound of my own voice!
I had my proctocolectomy nearly 9 months ago after 10 years of battling with Crohns disease. One thing i made a decision on was that once i had agreed and accepted my decision to have surgery i was then not going to look back and wish things had been different. It has worked for me and my new life so far is great. I've got to the point of eating anything, I'm working and doing so much more than I've done in the last 10yrs! I wish the same for both of you.
Its true what others have said in that this forum is brilliant and everyone is really supportive. So many of my questions were answered here so use the experience of others and don't feel you are on your own.
All the best to you both.

yes, thank you! I feel the same- I made up my mind, now let's move forward, look ahead, etc. Truthfully, I have no desire to look back, as living with UC/Crohns for a decade + really sucks!   My GI, PCP, heamtologist, & various surgeons have been strongly recommending this surgery for the past SEVEN years..... By now I'm relieved that the back & forth/indecision is over, & really looking forward to life on the other side!  

Thanks for all the input. I am still overwhelmed, which I'm sure i will be for a while, but I've realized that the ostomy is the way it's going to go....I'm not panicking and looking around for other options or other docs, I guess in some ways I have accepted this idea. I am beyond done with feeling bloated, in pain, nauseous, etc from being so darn constipated. Got a call from the docs office yesterday that the x-ray they did showed I am once again f.o.s. (full of sh**). Have to pick an upcoming day to spend in the bathroom and drink some oh-so-tasty mag citrate. I HATE that stuff. Whatever. i just tell myself now that it's temporary, there is help in sight! Most days (like today), I spend the majority of my day on the couch, curled up with a blanket, half asleep. I guess I am not so worried about like a year or two from now, when i have the bag and have a whole system in place for dealing with it. My fears are mostly around learning everything , understanding what's going on (both with surgery and after it), and I'm terrified of the healing process and all the little things that could go wrong. It seems like no medical procedure/problem goes "by the book" for me. There's always some little twist or oddity thrown in there.

Well, I'm off to bed again. Really nasty migraine today and pain from the bone infection and abscess in my jaw, of course, in addition to feeling like crap because I am full of crap!! Sorry for rambling and complaining today, just feeling a bit down.

Thanks again everyone for your comments, etc. Much appreciated!! I'm sure I'll be back to bother you all with millions of questions over the next few weeks/months!! God Bless!

Hi Sunny,

I have had a ileostomy since September 13, 2013.  Really scared at first and did not want it all but had no choice. Had two and a half feet of my small bowel removed, not an easy task but you will feel better in the long run.  No pain, eating again and feeling pretty good.  You will be fine!  I wish you all the best and send a big hug. I know how you feel but you will be soon on the road to recovery.  Back to your old self.  Take care!  God Bless!  Sue