Hi guys,
I would like to know who is it in your life who has stood beside you, supported you during the surgeries and other horrible things.
Also, who didn't support you. I am just curious about this.
As many of you know, my boyfriend has been amazing but I have also lost the closest friend I have had, we have known each other since 2nd grade. I guess since she wasn't the center of attention, she didn't want to be a part of my life. The good thing is, horrible medical trauma tends to weed out the people we don't need in our lives anyway.

Have a beautiful day...Hannah

Not sure what happened to the first part of this originally.... but just answered this sort of on another thread by Texas Girl ...!

Been on a chronic pain management course at my local hospital this afternoon - 3 hours of sitting in a horrid hard chair .... I am in pain all over now! It was however a good laugh (I expect most of us are high on prescription drugs!) and of course it was an afternoon out, a rare social event for me! Hope you are feeling much much better? Rach xx

Hi Hannah, my dear.

Ok - I'll start:

I've been very, very lucky. Everyone I care about has stuck by me. Right from hubby at the hospital during the awful pre-op days to the not-so-great post-op days where he was right in there learning how to change the appliance. To right now, when he says I'm the sexiest lady around and he loves me all the more.

My only sister was so stuck to me that there were times I wish I could have unglued her a bit. Her and her hubby know physical trauma and hardship and couldn't have been more supportive. Her and I are going to Seattle this weekend to watch a dog show -- my first trip since the ileo and I know I'm in good hands.

I've never had 'best' girlfriends -- quite a few lady acquaintances though. Those that I've told have mostly been glad just to see me. Very few are interested in the details (not that I want to give them, but you can see that "don't talk to me about poo" look in their eyes).

The story went around our neighborhood. It's a very friendly bunch and many were there to welcome me home. There are a few that don't approach me as much now -- I can tell that they are just uncomfortable with the issue and don't know what to say.

So, as I said, I know I'm very lucky. Support is SO important, I truly feel for those who don't have it.

That's another reason why this group is fantastic.

Edit to add: The ones who didn't stick with me are the medical profession! I really expected better care during my follow-up and these early months post-op.

Hannah, You Are So Right

This lady lost attention, was never a true friend in the first place. Sadly, there are many people like this around. Let go of this so-called friendship and focus on those who truly care about you, your loved one, and everyone else on this site!

You have been to hell and back, and we recognize that. I admire you greatly, and I am not alone in this.

Good luck, my lovely, and forget this so-called friend!!

Loadsaluv

Tippitop

At the time I got sick, I had just met the nicest guy. My husband had left me after 18 years to marry his secretary. I had little hopes or wants of ever finding anyone again. This new guy hung in there with me through the chemo, radiation, hysterectomy, but when it came to the 14-hour BIG surgery and possibly no more sex, he texted me goodbye. My girlfriend, who has been my friend through 3 husbands, was my strength. The whole 3 weeks I was out of town for the surgery, she stayed with me. She continues to take me to Dr. appointments even though I can go alone now. It does weed out the good from the bad. A few of my supposedly friends were wonderful and attentive while I was sick, but when I got better, they stopped calling and coming around. It was like I was a charity that ended. Don't want to be that to anyone. You just learn who the good ones are. There are people who are put in our life on a part-time basis for whatever reason, then there are those who come to stay. I am thankful for both kinds. Good luck to you, you are blessed to have a husband who loves you, that is my wish. Love, Jeanie in Georgia

As much as we're not talking at the moment, my wife has stuck by me through all the crap over the last 7 years.
Those that didn't were my 3 sisters. It actually took for me to have my first ileostomy done before they believed I was sick. They just thought I was bluffing (polite way to say lying).

And as for today, well, it can go to hell in a hand basket. But that's another story.

Well Hanna, I must admit there are three very important people that have stuck around and are still a big part of my life today. After being given a year at the most and surviving, my sister would take me to my radiation treatments and clean my vomit up while I was bedridden. I was on chemo 24-7 for six months with a mini computer on my hip pouring the poison into my body that was keeping me alive. Then a surgery to remove my rectum and then another 6 months of chemo. At that point, I had gotten used to the chemo so not to burden anyone, drove myself to the doctor, got my treatments, and just laid in the bed for hours throwing up until I felt well enough to drive home. 7 years later, the roles were reversed when she was diagnosed with cancer and it has made us closer than ever. Thanks to the grace of God, we are both cancer-free and doing well. My closest and dearest friend took a leave of absence from work after my surgery and we did the things that I thought I might never get to do with my future being uncertain. Sometimes I think I only survived because of the promise I made to my niece to watch her get married. Here we are many years later and I got to see her marry and she is raising two wonderful children that I adore more than anything in this world. I must admit there is one person who disappointed me and that was my childhood sweetheart. After reconnecting 25 years later, we started a relationship and she could not handle the bag and left me in a cold and unfeeling way. Well, her loss not mine.

When I was to have my surgery, I had no one. I went in on Tuesday for a scope and was told to be back here on Friday for surgery. I dropped my 3-year-old son at my mother's and stayed three weeks in the hospital. I had an allergy to the staples and the pain medication, Percocet and Demerol, nearly killed me. And like Gus says, my sister thought I was faking. Not once did my mother come to see me or bring my son. After the third week, she called me on the phone to see when I was coming home. She had enough of babysitting. None of my sisters even bothered to help her out. The next morning, I told the doctors to discharge me so I could go home to take care of my son. Faking? Why on earth would I destroy my body and live like a nun for the rest of my life? Right, that's just what I wanted: a hideous scar and an outhouse attached to my side. Oh joy.

When I had my surgery, my dad and 2 close friends stuck with me, and the others (3) that dropped off, I cannot call friends.

Hiya sweet Hannah Banana. Well, my dad has always been an awesome support and my Gram... my ex-husband Rick was fantastic through it all (we were together during my last two surgeries, and beyond). Gram is gone and the ex is... well... the ex.... lol.... Dad is still around but frail these days, so I don't like for him to know when I have 'trouble' and I keep things from him to the best of my ability. I'm pretty much a loner right now, a little scary and sad at times... but I guess my need to take care of someone who shares many of our problems far outweighs my own need to have help every once in a while. I know, as do we all, how scary and actually terrifying our troubles can be and how badly we sometimes need someone at our side... for those of you lucky enough to have someone dedicated at your side, hang on to them and appreciate them! Too many of us are floating around out here alone....

I find myself reflecting quite a lot about your questions, Hannah. I can't wait to have someone at my side again and my whole world will revolve around him. I want to make him feel as secure and as loved as I have been in the past and take care of his every need... I remember how comforting that feels. I am wishing the same for everybody on this site... we all need people we can totally count on. Cheers, Hannah! ...and hey, I'm so glad you're still hangin' with us. Love yah!

~Your Doe

Hello all
Well, like WD, I too had one of my parents there. So the two weeks I was in the hospital (of course, we know that I am not nice when I am on drugs), so the doc gets two barrels of psycho till I heal and he tells me the truth on what's going on. My mom didn't leave me until late every night. Then, after release, I had everyone on this site to ask questions and to get some answers. Another member here helped me also so I could talk to others. Since then, I did get my SSDI and still dealing with that and being alone trying to figure out how to get to move back into my home and afford all the bills again. Mom was there when I woke up, a couple of my friends stopped by, and then a couple of times after I got out. Then, I have quite a few that tell me thank God it didn't happen to them and that I got it cause they said they would be nut cases and wouldn't be able to deal with it. Then, my younger brother also has been there with a good friend of mine that makes sure that I get out and do things so I don't sit around and get depressed since there is no girl on my side to snuggle with or to help deal with all the crap we do.

Hi all
I had the support of both my parents. They were wonderful. I have a very special friend who, without her, would have cracked through relationship breakup and then 8 weeks later my op. She has been through every step of the way with me. She was there in intensive care waiting for me after my op, picked me up when I'm down, and smiled when I have. I feel I owe her the earth. The other day I was down, she sent me;

But as the saying goes, "Men come and go, friends are there FOREVER........".......I have seen you on high!...and I've picked you up when you are low........but to hear you say those little words....is like music to my ears........I have seen you go from strength to strength and hunni...you're only gonna get stronger.........Those who love you, and I mean love you, will ALWAYS be there..UNCONDITIONALLY.........xxxxx. ANOTHER;
"This lady deserves a platinum medal........she has thrived through everything that has been thrown her way over the last 4 months and still puts a smile on her face....I'm so very proud of you hunni, words cannot describe......I also want to thank you for trusting me as your friend and turning to me when you needed me the most......so let's concentrate on your future because if it's anything like you.....it's going to be bright.......all my love and support forever"......Neilly...xxxxx

She has been wonderful

Wounded doe, I'm with you all the way regarding having someone by our side, that empty gap, just waiting to be filled
Weewee, I sooooo miss the cuddling, I yearn to have a strong pair of arms wrapped around me again

Tine

XX

I was really lucky - no one fell by the wayside. Friends in particular and one of my brothers and my sister were very good. My girlfriends were great and they cooked extra when feeding their families and brought it round to me. It was great.

The flip side was that when I was given the all clear, my mate Steve banned me from playing the Cancer card.

Tine, have a virtual hug from me. I don't have the strongest arms, but they are not spindly, and if I am ever up Nottingham way or you visit the south coast, you can have a proper one.

What a beautiful post, Tine...very cool....You are SO right about true friends being there forever and about those who really truly love you, loving unconditionally. These things don't come along in life often, sadly, they just don't...so when we have people like this, we should never let them go...always keep them close. And our need to be held by strong arms again, "that empty gap just waiting to be filled"... yup dear sis, I hear you....and you mentioned the cuddling, again ditto! I cuddle like a kitten and miss that soooo much...I want that and need that too, and when I have a man at my side, my life will be complete. He will get someone who will be fully dedicated to him and will NEVER cheat on him (I don't roll that way, I could never hurt the soul of someone I love, they have too much value to my own soul) and I will hope for the same in return...but my life is very empty without having a strong male at my side...................and come on, most of you know by now, it's gonna take one Hell of a man to challenge a partnership with your Wounded Doe LOL...little handful that I can sometimes be...he's gonna need to be mentally strong as well as physically...gonna have to be a bit of a Warrior I think lmao, not afraid to keep me in line 'n grab that bullwhip out of my hands and take me over his knee!! heehee "The Almighty Wounded Doe Conqueror!" LMAO!!

Tine, I am wishing you luck in finding those strong arms to hold you at night, sweetie!! Here's to the both of us!! ALL of us!! Cheers!! Keep pouring your heart out, hun, you do it so well, LOVE reading your posts!!

The ones that stood by me were, of course, my husband, but nothing like Mom!!! She was there the whole way through the thick and the thin. I couldn't have done it without my mother. She was and is the best ever. But I did have a friend. I called one of my best friends until then. Something happened. I never saw her in my hospital room, at my house, or on the phone. She just disappeared!!! Now, 2 years later, she was put in almost the same predicament that I was in. She was lucky though, she didn't have to have the colostomy. So I thought, what do I do? Do I call her? Do I go see her? Well, being the good person I am, I did go see her in the hospital, but the conversation was slim. I know exactly how you feel.

Thank you to everyone for the awesome posts.
You are all amazing, precious people and I love each and every one of you. I believe you can love people you have never met. The people I left out of my original post who have stood beside me are you. I won't name names because I know I would accidentally leave one out..lol...this site and its people have by far, given me the most hope, the best support and pulled me out of many days of self-loathing.
You are all so wonderful and I hope you consider me the same way I consider y'all..family.
I love you.

We love you too, Hannah! ...and we're not letting you go!

What can I say, the people I really care about have stood by me during my trials and tribulations, could one ask for more? AND then I have found on this site, more empathy and understanding than I ever thought possible and will forever be grateful. I am always here to try to lend a helping hand to all, my most sincere wishes to all for the best you wish for. Ed

I sit here trying to put my story into words and realize that your stories are my stories. I could analyze the past and pick out horror stories, but what's the point? It's the past. I'm here in the now, and that's really all we have. I have a few friends now. Maybe I need more. Perhaps I don't want more. I would like nothing more than to find that special someone (hard to do in this world, let alone with a colostomy). Anyway, I'm just rambling. Just thought I would post something. Thanks for your posts.

I had the most amazing support from everyone I know. I just have a little step-family but they were great with their love and help. My partner does not enjoy good health herself but was a real rock for me. My youngest stepdaughter acted as a stand-in driver so when my partner was busy, transportation was not a problem. My partner's sister is a lay preacher and she included me in her prayer services. Plus, M/P belongs to a small opera group and I had cards and messages of good luck from the members.

I am retired now, but the company I worked for told me to take my time during recovery and not to return to work until I was ready, as they were holding my job open for me.

I think all this aided my speedy recovery and my acceptance of what a trauma I had been through.

My workmates also took it in turns to visit me in the hospital.

Hannah,

Thank you for posting this most inspirational post. It's been a long time since I have looked back. I feel like Sandra Bullock! I would like to thank...

Support team:

My mom: She was going through chemotherapy for breast cancer while I was at my sickest. We nursed each other back to health.

My ex-boss: She scheduled nurses and risk management team to be in my room after the surgery after almost dying at the hands of the hospital (blogging about this). She saved my life.

My ex-husband: He protected the kids from the trauma of their mom's serious illness. He is the one who made the decision for me to have the proctocolectomy and managed the household while the nurses cared for me at home.

My surgeon #1, urologist, gastro, gyno, and family practice doctors: They treated me like a full member of the care team. I was well informed and managed both physically and spiritually. Although I no longer live in the same state, I actually still visit them about once a year to say hello.

Friends and Neighbors: Who took the kids to school, daycare, etc. Fed them. Cleaned my house.

Crohn's Ostomy Support Group: We had a very active chapter. They sent someone every day to the hospital to support me and my ex-husband.

Chronic Disease Psychologist: This dude was worth his $125 / hr. He specializes in grief loss, depression, relationship management, sexual disorders, due to long-term chronic or terminal illness.

*****************
Non-support team

Surgeon 2: Although he was also a Crohn's sufferer, he was a condescending jerk. Didn't tell me $H!T about what to expect. Reduced my prednisone too quickly and almost killed me. We couldn't wait to get rid of each other!

Thanks everyone for sharing your stories; they really blessed me.

That was a very interesting question. When I think about the 10 surgeries I had and no family around, it was terrible. Friends and neighbors did more for me than anybody else. My son did not know how to deal with it and I admit that I wasn't much better. There are still days when I am in denial. I went through all of this in 2003 and had the surgeries in one year. It started with a colostomy and then ended with an ileostomy. The last surgery was for 3 large hernias. I am held together with mesh. The surgeon said that would be the last operation I could ever have. So, if something terrible goes wrong like a blockage or scar tissue problems, they said they could not operate. Besides losing all the weight, I have to watch everything I eat. Just to prevent a blockage. There is so much I miss in the line of food. My last report from the doctor was that I am losing weight because my system is not digesting the food. It just goes through me.

It is good to read all the success stories on here and I learn a lot from those having certain problems and the solutions. After reading your stories, mine don't seem so bad at times. I do wish I had a support system here but I guess it is not meant to be right now. I just know that I have to accept me for me just the way things are. Take care everyone and keep writing as I enjoy reading it all.

Lisa

P.S.: I have a magnesium deficiency and have to have shots every two weeks. Does anyone else have that problem?

Thanks to everyone who posted on this.
I have enjoyed reading them.
I know how hard this is, even with a great support system. It's a continual rollercoaster ride, even with the reversal, I go through so many ups and downs.
Y'all are a welcome addition to my family.
Love you all.

Interesting question....
I was diagnosed with MS in June of 2009. After my diagnosis, it seemed that many of my friends sort of disappeared. Granted, my friends were more like acquaintances, people to hang out with, not deep deep friends. But I really thought they would reach out to me more. When they didn't, I finally reached out to them, but felt like our connection had been...interfered with.
Then, I had my emergency colostomy in Dec of 2009. If I thought I lost touch with most of my local people after the MS diagnosis, well, now, it's even worse.
I think people don't know how to respond to serious medical conditions. I also think people are repelled by ostomies. I know that before mine, I didn't realize that anyone other than very very old, incontinent people, with stained pants, had ostomies.
So that's who didn't stand by me.
Who did stand by me? My husband never skipped a beat, and is so supportive and understanding and accepting. He has never seen my stoma (and clearly doesn't want to). I still don't undress in front of him since the colostomy, and feel a bit of distance due to the change in my body. It's mostly me, but...it's there.
My mom, who is turning 80, has been an unflinching support for me, there when my ostomy was first unveiled, and as I learned to change the appliance.
My brother will always listen to me, and has shown me great empathy, but he lives in NY (and I am in FL).
My best friend from high school came down to take care of me shortly after I got home after surgery. Now that's a friend! She cooked, shopped for food, even for some clothes for me that I could wear, cleaned, took me to doctors.
I think I was more surprised by who didn't come through, than who did.
Jayne

Thanks for sharing y'all.
The ones who didn't stand beside us, it's a great way to weed out the ones we don't need anyway.
The ones who did, we know we would do the same for them if the situation was reversed.
We can't say enough wonderful things about them.
{{HUGS}} Hannah