05-02-2011, 09:54 AM   #1
MissMandy
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my story

I am 29 (30 in june!) and have been diagnosed with Crohn's since 2005, but had it for years before that.
I was just in the hospital again with a flare and was told that I have one last chance with meds before I will need to have surgery. I have reacted to pretty much every med they have tried, or the meds just don't work. I am allergic to azathiprine (sp?) and remicade. Methotrexate made me puke. entecort stopped working. Prednisone I cannot handle the side effects. So now they started me on Humira.

I apparently have a rare case of Crohn's because it's only in my colon. So if the Humira doesn't work, they will have to remove my colon. I'm terrified. I am single. I was married but he couldn't handle my disease, among other problems, so we divorced 3 years ago. I have a 7 year old daughter. I would like to get married again someday and have more kids, but what guy is going to want to date a girl that has a colostomy bag?

I also take 30 mgs of Oxycontin daily to deal with the pain. Does anyone else take pain meds daily?

Last edited by MissMandy; 05-02-2011 at 10:08 AM.
05-02-2011, 03:53 PM   #2
xJillx
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Hi Miss Mandy! I sure hope Humira works for you. Did you have your first injection yet?
But if Humira doesn't seem to be the answer and you end up needing a colostomy bag, don't think of it as being the end of the world. There are so many on here that would argue it has greatly improved their lives. And if a guy wouldn't want a relationship with you because you have one, then he obviously isn't worth keeping around anyways, right?! Good luck, Mandy, and welcome to the forum!
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
05-02-2011, 04:10 PM   #3
CDDad
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Hi Mandy,
I would date a girl with an ostomy bag! Then again I have one too I hope you can avoid surgery. I'm on Humira too to keep me out of future trouble.

Good luck and welcome to the forum.
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3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
05-02-2011, 06:37 PM   #4
ameslouise
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Hi Miss Mandy and welcome!

I think there are others on here with Crohns Colitis (limited to just the colon) as well. I am sorry to hear you are not having such good luck with any meds. I was in the same boat. I just had surgery 8 weeks ago and am sporting a lovely new bag!

I know it sounds like the end of the world for a young, single girl - it must be scary to think about dating when you have a bag. But if you poke around the Stoma Subforum, you will find that there are many of us out there - married, dating, single. You know what kind of guy would want to date someone with a bag??? A GREAT GUY! If a guy can handle that, then he is a KEEPER!

Worry about getting better first, so you can be healthy and care for your little girl. Then you can worry about finding a man!

Good luck! - Amy
05-02-2011, 11:30 PM   #5
MissMandy
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Thanks everyone! And I know I need to worry about getting better before I worry about dating anyone. It's just hard because my BFF and I had just been talking a couple of weeks ago about turning 30 and how neither of us are where we thought we would be at 30. I was telling her about where I wanted to be in 5 years, and now it feels like all the hopes, dreams and goals I had for myself are just shattered.
And it doesn't help that the guy I was dating totally dropped me when I got put in the hospital. He knew I had CD, I told him on our 2nd date. He knew I was sick. I barely heard from him that week and then when he found out I was in the hospital, I didn't hear from him at all. This is some one that said he cares about me. Apparently not. It was a huge slap in the face. My husband couldn't even deal with me having this disease and he took vows that said he would love me in sickness and in health. Ha. So much for that.

Like I said in the thread about living with CD, I'm not in a very good place mentally right now in dealing with this disease. I had no idea that I was sick enough to need surgery yet and I am still reeling and trying to deal with it all. Humira scares me. I'm terrified that I am gonna react when I get my next dose of it next week. I'm terrified the side effects. I'm terrified that it's not going to work, or that it will work for a short while and then will stop. And then I will need surgery. If the surgery I needed was a resection I think I would be handling it better. it's the thought of having to have a bag full of my crap attached to my body that I can't deal with. As if there wasn't already enough gross and embarrassing things associated with this disease that I have to deal with, now there's this too!

I'm sorry for rambling on like this. I have no where and no one to vent to that really understands. I live in a really small town. There are no support groups here. My town is so small that there is not even a GI here, I have to drive 45 min away to see a GI! So not a lot of support around here for me at all.
05-03-2011, 10:31 AM   #6
xJillx
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Right now, just focus on getting well and try to take one day at a time.

Hang in there, Mandy.
05-03-2011, 01:39 PM   #7
guest23
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Hi Miss Mandy,
Please do not let your ex make you lose faith in other people. We have all met them along the way in life - just walk the other way. I think that there are a lot of heartless people out there with no compassion in their hearts, but I think there are even more people who truly do care for one another - through thick and thin. One day you will meet your prince. Also, I wanted to ask if you have ever gone for a 2nd opinion? You mentioned that you live in a small town, and have to drive 45 mins to see your dr. Is he located at a well recognized medical facility?
05-03-2011, 09:11 PM   #8
acg101
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Hi Mandy,
I would have no problem dating a girl with an ostomy bag! I have a bag and it does not bother me at all. Surgery should be the last resort but it changed my life to the better.

welcome to the forum.
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-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
05-04-2011, 02:13 PM   #9
ameslouise
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Aw, Mandy. I am sorry that you have had two loser men in your life that are so wussie that they can't deal with sickness. God help them if they ever get sick - they will no doubt expect their partner at the time to wait on them hand and foot!

I know it's frustrating when you kind of set a plan for yourself and life seems to pull the rug out from under you. I certainly didn't expect to marry someone 4 years younger than me, convert to Judaism, only have 1 kid and shit into a bag for the rest of my life. Talk about curve balls! But life has a way of working itself out and if you do your best and take care of yourself and try to maintain a positive attitude, things will work out. Maybe not how you expect them too, but sometimes even better!

Sending hugs to you -Amy
05-05-2011, 08:07 AM   #10
Tim
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Hey MissMandy I was only recently diagnosed with Crohns disease and it's only active in my colon ie: crohns colitis. I had no idea it was rare. All the best
05-05-2011, 10:54 AM   #11
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This disease can take a terrible toll on one's mental state, but the less stress and anxiety the better you will feel physically. Do whatever makes you happy right now. I usually buy super cute pair of shoes and get my hair done. While these things are only temporary, being depressed has always made all my symptoms worse so I will do whatever I can right away to put a smile on my face. Funny movies always help too. So do something every day that makes you happy and know that you are not alone. There are definately some mature guys out there who can handle the crohnies. While you have crohns disease it does not define who you are.
05-06-2011, 11:13 AM   #12
MissMandy
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I am definitely trying to keep my life stress free, but it's literally impossible right now. I live with my parents and my mother and I do NOT get along. It's a long story but she causes me so much stress, hurt feelings and heartache. We just had another one of our epic fights last night and I was up almost all night crying. She just flat out doesn't care about me, my feelings or my health. And I have no other options to live somewhere else. I am stuck here for the foreseeable future.
05-06-2011, 11:20 AM   #13
MissMandy
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Hey MissMandy I was only recently diagnosed with Crohns disease and it's only active in my colon ie: crohns colitis. I had no idea it was rare. All the best
I didn't know it was rare either until my new GI told me, and up until this most recent flare and hospitalization, I had no idea that my crohns colitis diagnosis meant it was only in my colon! I thought it meant I had both CD AND UC The GI that DX'd me didn't explain it to me at all and I was overwhelmed and confused and didn't think to ask.
The good thing about it only being in our colons is that if we need to have our colons removed, there is a much much lower (like pretty much NO chance!) chance of the Crohn's reoccurring in another place in our intestines. So (as I understood what my GI told me) surgery for us is pretty much a cure, except for the whole having a bag for the rest of our lives part.
05-07-2011, 01:48 AM   #14
Tim
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Oh really i guess that's good news if mine ever did get that out of control as far as being able to remove the colon. I know my GI told me crohns was most commmon in the small bowel and i'm not sure if that would change the symptoms people get. I remember a couple of months ago when i experienced what i now know as my first known crohns flare i was in terrible pain and it was a bloody pain in the ass (no pun inteneded) and since being ill have had to drop out of university temporarily. Luckily lately i've been feeling better and the pain and other stuff has not been a real issue thanks to the prednisolone I am on among other meds with it. I too know the suffers of stress and the vicous cycle it can cause especially dealing with the crohn's colitis symptoms on top of it. I really hope you can make the best of your living situation and try not to let it affect your health/stress levels in a bad way. This is something I am literally tackling and trying to solve in my life also right as we speak as well. So you're not alone in that either. Wishing you the best and hope things start to pan out soon for the better. Bye -Tim
05-07-2011, 10:41 AM   #15
MissMandy
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Well Tim I am glad I could be the bearer of some good new for you!! I hope that things continue to go well for you and that you can get back to school soon! I am supposed to start college in the fall, I am not sure if that will still be happening. I am thinking I will have to wait and see.
last night my poor little girl was asking me questions about my CD. I can tell she is so worried. I wasn't feeling very good last night, and she wanted to know if I had found out if I needed surgery yet or not. So I sat down and talked to her about my disease. I realized that I had never really explained to her what it was. She was too young to understand when I was DX and we just never really told her. She's always known that Mommy is sick, just never knew why. I think I did a pretty good job of explaining to her and that she understands. She is pretty skeeved out by my having to give myself a shot though! She wanted to know exactly what days and times I will be doing it, wanted to make sure I will do it at a time when she is not home i told her not to worry that even if she was home I would never do it in front of her! The I got out my practice pen that was sent to me and showed her exactly what it was and how I would do it and she seemed much better. BUT she also wanted to know what the surgery was that I might have to have and she is definitely VERY grossed out by the ostomy bag can't say as I blame her though!
05-07-2011, 11:09 AM   #16
Jer's Girl
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Hi Mandy! I'm sorry for what you are going through right now! I would rather live in a garbage dump than live with my mother so I feel for you.

Some times having this disease is a blessing in disguise because it helps us to weed out the people in our lives who don't deserve to be in our lives any way. I just wanted to assure you that there are some good men out there who will love you in sickness and in health! I know because i got one! I got married in July with a bag, and it was one of the best days of my life. Many of us find that living with a bag is a lot easier and better than spending the rest of our lives in pain or running to the bathroom every 5 minutes! Although mine was temporary, and before I had one it was literally my worst fear that I would end up with one, I would get one again in a heartbeat if i needed to.

Good luck and welcome to the forum!!
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05-07-2011, 11:10 AM   #17
Tim
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That's great how you're little girl is concerned it shows how much she must deeply care for you and I'm sure she will become a great asset to you in the future as it sounds like you have a very sensitive,compassionate little soul itching to being able to help her mummy (or mommy to those in america). I have no kids of my own (well not any that i know of, eeeek) nah just kidding. But I do have neices and the times I visit them and I'm not feeling very well they always come up and give me big hugs blue out of the and it's great how kids show concern and care in their own little way, so cute! Very glad to hear you have that support network available, albeit still young but nonetheless ready to help you when in need on future occasions. Hope the next half of this year you can sort out a plan and get back into your studies and such too and everything becomes onwards and upwards in your life. This is all new to me so I'm hoping I keep feeling better I've noticed my sense of humuor is coming back seeing as I'm not always feeling so crummy as of late. And I will always be interested in reading how other people around this board are feeling and hope everything is well and all the stress and pain that's giving you that bogged down feeling goes away at least for a time period long enough for you to be able to just relax and smile and enjoy the journey of life. All the best to you sweetie - Tim
05-07-2011, 12:42 PM   #18
Joleen23
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Hey Mandy , Im in the crohns Colitis group too, Really hope things get better for you soon :-) x
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Methotrexate 20mg per week
Omeprazole 40mg per day
Ferrous sulphate 3 x tablet per day
Folic Acid 1 per day (5 days a week)
Ranitidine
(trammadol & Paraccetamol for painrelief

Diagnosed Nov 2010 - Crohns Colitis
(bowel problems since 16yrs) 29 Yrs old now
So far tried Asacol,Aza,6mp,Remicade
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