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Crohn's Disease Forum » Your Story » Is there anyone out there??


07-21-2015, 07:09 PM   #1
Pattynocolon
 
Join Date: Jul 2015
Location: Worcester, Massachusetts
Is there anyone out there??

Hi everyone,
I'm really not sure how this all works but I'm new to all these forums. Let me start by saying I started getting constipated when I was pregnant with my second child back in 2008 everyone said not to worry it was just a pregnancy thing. I let it go. After she was born the problems continued to get worse, bleeding, mucous and diarrhea. I called the doctor they set me up for a sigmoidoscopy. The doctor said I had proctosigmoiditis ( ulcers in my rectum all the way up to the transverse part of colon.) so they put me on all kinds of meds. I ended up pregnant again with my 3rd baby. That pregnancy made me flare up so bad, but I refused medication for the baby's sake. After she was born I ended up catching c-diff and was hospitalized for 2 weeks. I had like 5 colonoscopies thy could never get to the ileum because I was so swollen they didn't want to go through my colon. So more medications, enemas all kinds of treatments for ulcerative colitis ( nothing helped ) I continuously got sick losing so much weight. I ended up so sick again I was hospitalized this time because my colon swelled up so big that it almost burst ( Toxic Mega Colon ) My poor husband and children thought this time I was going to die because my fever was 106.4 I was so out of it. Luckily they caught it in time that they were able to give me antibiotics and get me better. After this scare the doctors and I decided the only way to cure what I had ( ulcerative colitis ) was to remove my entire large intestine. So in 2011 I had it removed and they made a jpouch out of my small intestine with a temp ileostomy. I thought this was it I was going to get better we cured my disease!! Yay. A few months later I got pregnant with my 4th child. ( after they told me chances of having a baby were very slim). Luckily I had the ileostomy removed before they knew I was pregnant ( that's a whole different story) As my pregnancy progressed they were concerned because I all the narcotics I was taking ( all prescribed) 360mg of Oxycotnin a day plus about 80mg oxycodone a day. I thought the baby wouldn't make it and if he did he would have so many problems. So I delivered a healthy baby boy at 37 weeks at that time I was only 104lbs. After delivery I was having a lot of problems with my jpouch initially they thought it was pouchitis. But oh no I had more ulcers all in my jpouch. This was not what I wanted to hear, I ended up with another ileostomy but everything that could go wrong with an ileostomy did, I ended up with a blockage and hospitalized again, worst pain I have ever felt. Then the infection started I went home for a few weeks then I went back to the hospital for another 2 week stay. Going home for the 3rd time with a picc line for antibiotics. (6 weeks). Through all this fun I still only had a diagnosis of ulcerative colitis, come on really?? Mind you I had all kinds of Crohn's disease symptoms ( huge ulcers in my mouth, erythema nadosum (large lumps under the skin from my knees down) bleeding, mucousy stool, diarrhea up to 20 times a day) yet no doctor would diagnosis me with crohns I think they were afraid to admit after all these years they were wrong. I took it upon myself to go to Mass General where the doctor looked at my records and said are you kidding me you definitely have Crohn's disease and I'm so sorry that you have had to go through all of this because if we had just figured that out back in 2008 or even 2011 we could've saved your colon. I wanted to cry so bad, everything that me, my husband and my poor children have had to go through over these last 7 years has been hell!! Also did I forget to mention I worked full time through all of this at a hospital. I was a phlebotomy supervisor for over 11 years, I recently decided I couldn't do it anymore. Right now I'm scheduled to go in for a jpouch excision and a permanent ileostomy. Hopefully this will alleviate all the abscesses ( that have seton strings in them ) that I keep getting. This disease has ruined my life for the last 7 years and I'm tired of it. My poor husband has been so good through all of this, I couldn't imagine not being able to be intimate with my new wife for months on end once it was over a year. We were married August 2008 right before all this started!! We joke around and say I'm allergic to him. I'm so sorry for going on and on but it feels so good to get this all off my chest. Even as long as this is it's really only a quick summary I'm sure I've missed quite a bit of info but I thank anyone who reads this truly I do.
07-21-2015, 08:33 PM   #2
araceli
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Join Date: Nov 2012
Location: El paso, Texas

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Welcome to the forum. You came to the right place for support. I am sorry you went through such a terrible time. Are you currently on any medication for Crohn's?
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
07-21-2015, 08:40 PM   #3
Pattynocolon
 
Join Date: Jul 2015
Location: Worcester, Massachusetts
Welcome to the forum. You came to the right place for support. I am sorry you went through such a terrible time. Are you currently on any medication for Crohn's?
I'm currently on remicade. I believe we are stopping that because after 2 years on it, it doesn't work anymore.
07-21-2015, 09:21 PM   #4
araceli
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Join Date: Nov 2012
Location: El paso, Texas

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Have they checked for anti-bodies? sometimes the dose or the schedule need to be change. I really hope you find something to get you in remission fast. Feel free to ask any questions or just vent away if you need to.
07-22-2015, 12:05 PM   #5
Pattynocolon
 
Join Date: Jul 2015
Location: Worcester, Massachusetts
Thank you. I think it will help just to vent and get my story out there. I hope my story can help someone else!
07-22-2015, 01:58 PM   #6
Madhu
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Location: New Jersey

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Hi Patty

I am so sorry for all the horrible pain you have gone through all these years. I hope you have a good GI now who knows what they're doing. You are in my prayers now and I sincerely hope you get to have a normal life soon. Please post anytime you want. We are all miserable hearts wanting to vent out and wanting support

__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
07-23-2015, 08:08 AM   #7
Susan2
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Join Date: Dec 2011
Location: Geelong, Victoria, Australia

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You've had a really hard time. Unfortunately, many of us take a long time to get a correct diagnosis and, if you do have Crohn's, they should never have given you a J-pouch.

I hope that things start to get better soon.
__________________
Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
07-23-2015, 01:15 PM   #8
Pattynocolon
 
Join Date: Jul 2015
Location: Worcester, Massachusetts
I have no clue if anyone else out there has had problems like the ones I have had. My question to them would be " are you still able to be intimate with your husband?" Has any other couple had to completely cut out intimacy all together? For any long lengths of time? How has this ( Crohns Disease ) affected other couples marriages or long term relationships? I just want to know I'm not the only woman out there that has had to just look her poor husband in the face and say as much as I want too be intimate with you , I just can't. It has gotten so bad to the point of my husband asking to have relations with another woman, and bringing up divorce on several occasions. We have been married as long as I've been sick 7 years come August and he is my soul mate, I couldn't imagine him leaving me for another woman,which he swears he would never do. But just like every other man out there intimacy is very important to him. I have asked the GI doctors if here was something wrong with my hormone levels, is there any specialists out there that might know what the hell is wrong with me if there is anything wrong with me at all. I will be damned if this disease ruins my marriage. Does any have any input on my situation or any help?
07-24-2015, 09:06 AM   #9
Madhu
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Join Date: Jul 2015
Location: New Jersey

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I have no clue if anyone else out there has had problems like the ones I have had. My question to them would be " are you still able to be intimate with your husband?" Has any other couple had to completely cut out intimacy all together? For any long lengths of time? How has this ( Crohns Disease ) affected other couples marriages or long term relationships? I just want to know I'm not the only woman out there that has had to just look her poor husband in the face and say as much as I want too be intimate with you , I just can't. It has gotten so bad to the point of my husband asking to have relations with another woman, and bringing up divorce on several occasions. We have been married as long as I've been sick 7 years come August and he is my soul mate, I couldn't imagine him leaving me for another woman,which he swears he would never do. But just like every other man out there intimacy is very important to him. I have asked the GI doctors if here was something wrong with my hormone levels, is there any specialists out there that might know what the hell is wrong with me if there is anything wrong with me at all. I will be damned if this disease ruins my marriage. Does any have any input on my situation or any help?
Hi Patty,

Though I am on the other end of your situation, I totally understand. My husband is a Crohnie and I'm on the exhausting end of taking care of him (I don't regret it even a bit). As far as I've seen, intimacy is not everything in marriage. I do agree it has a big role, but we have been married for almost 2 years now and it has been tough for us ever since his symptoms started too. Since that time, we have not been intimate at all (it's almost a year now) and frankly, I haven't had much time to think about it since I have to spend every minute taking care of him. And we are bonding a LOT in this period which I call "our kind of intimacy". We talk a lot, we share our problems and help each other out. I have never been more attracted to him than now. I trust your husband would feel the same way about you too, and right now his primary concern would be to bring you back to normal health. So have that confidence and don't care about anything else, is all I would say Good luck!
07-24-2015, 09:43 PM   #10
Pattynocolon
 
Join Date: Jul 2015
Location: Worcester, Massachusetts
I'm happy to hear about the other side of it but woman are way more understanding about not being able to be intimate. I'm truly ok with not being intimate with my husband it's him. ( he tries so hard not to make me feel bad about it but I can tell he is so frustrated with me) I wonder how your husband would be on the other side and if you were the sick one? Would he be as understanding? My husband has taken very good care of me since I've been sick. I completely agree with you being intimate can be so many other things it doesn't need to be sexual.
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