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04/21/2011 05:33 PM

New Crohnie

amylasa
amylasa  
Posts: 6
New Member

Hi, my name is Amy and I am 27 years old. I am married and have a beautiful 3 year old son. And I was diagnosed with Crohn's about a year ago. And since then, my life has been a battle. I have been having stomach problems all my life, but the doctors just said it was lazy bowels. Little did they know that I have had it for some time now, and it is severe.

I have lost 60 lbs because of my Crohn's and I believe it to be ruining my marriage as well. I am so disgusted by what my body has become and does that I push my husband away. I am looking for some comfort and other people going through this because I don't know any. So, this is my introduction and I hope I can find some support in this group. Thanks,

Amy

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04/21/2011 06:00 PM
kildare56
kildare56  
Posts: 4146
VIP Member
I'm an Advocate

Amy, if you are looking for support you came to the right place. Continue pursuing the medical end, but it sounds like you need to look at the psychological side as well. You seem to have had CD just a little longer than I and I know the big changes in weight we go thru.

Let me be sure you understand that I am a married guy. My wife has been right there with me all the way. You did not say how much your husband and you have talked about this. You have to do that to keep a decent marriage anyway.

If your husband loves you and you give him a fair chance, you will find you are as attractive to him as ever. Please don't have your husband fail a test he hasn't had a chance to take.

This is a great group and I'm certain you will get good advice from the members. Give us a chance. Give your husband a chance. Most of all,give yourself a chance.


04/21/2011 06:35 PM
murcgem64
murcgem64  
Posts: 167
Member

Amy, you definitely came to the right place for support. I can't tell you how many days I've just felt better by having some reassurance from the wonderful people on here. I'm sorry to hear that you have been suffering so much, and that you feel this is affecting your marriage. I have struggled with the same issue. I feel that sometimes we do push others away because there are so many embarrassing qualities that come along with this disease. Kildare is right, keep the communication lines open, it's the only way to secure a good marriage. I'm sure your husband doesn't truly understand because it's sometimes so difficult for us to convey the things we feel and experience.

I hope you will find some comfort by joining this group. I know that myself and many others have. Good luck and know that you are not alone.


04/21/2011 06:54 PM
starshine
starshine  
Posts: 875
Senior Member

Oh Amy..Welcome...I am sad to hear of your cd and your

personal relationship...both take time to heal...I trust you will have a good night and a better tomorrow!


04/21/2011 08:49 PM
zaftig
zaftig  
Posts: 521
Member

Hi Amy! Although I'm saddened that you've "joined the club", I bet it's a relief that you have a concrete diagnosis for this issue that's been in your life for so long. This community is awesome: I'm your age, and this is the first online group I've found that provides the genuine, sincere support we Crohnies need!

I, too, am married and understand what you mean by how it affects physical intimacy. Sometimes when I'm having a really bad flareup, there's no way that I feel clean enough to 'be' with my hubby unless I took a shower. For quite a while I didn't explain to him why I was verbally amorous but not physically so, but as soon as I told him what was going on (and yes, even going into grisly details at times), he really began to understand. And empathize. And allow ME to be the one to 'make the moves' when comfortable after a particularly rough day of sprinting to the bathroom.


04/22/2011 02:42 AM
lyris
lyris  
Posts: 276
Member

Hi Amy,

I guess I've had Crohns the longest, although it took a very long time for the doctors to diagnose it.

My then husband knew something was wrong, and I was up front with him about what was happening to me. He was great with taking our girls to special places on Sundays and he helped as much as he knew how to with them.

Our marriage ended for an entirely different reason though.

I can imagine he feels completely helpless watching you suffer, but I would bet anything he does care very much about your health, so hang in there Amy.

Has your doctor started any program on how to treat your Crohns?

I suggest you try to keep a chart as to what you ate and when, when you took your pills, if you get upset and if you have an attack put all that on your chart. It may show you a pattern as to what is causing your attacks.

You might show the chart to your husband who could be of much help to you with this.

Good luck, Amy.


04/22/2011 08:17 AM
amylasa
amylasa  
Posts: 6
New Member

I have recently start Remicade Infusions, I have tried steriods, humira, and pentasa with no relief. Remicade is my last resort until my doctor does surgery. I love my doctor, it took a while to find a good one, but he has been doing everything he can to "fix" me. I know with surgery it is only a temporary fix, but as my flare ups get worse and makes my whole body hurt with it, it sounds like a pretty good choice.

04/22/2011 10:00 AM
lyris
lyris  
Posts: 276
Member

Have you had any hives after the Remicade? I know not everyone has reactions to it the way I did, but I try to warn others about possible side affects.

04/22/2011 04:21 PM
amylasa
amylasa  
Posts: 6
New Member

NO, I haven't had any issues thus far. I have had 3 treatments and so far seem to be doing ok, but haven't totally eliminated my flare ups.

04/22/2011 04:34 PM
eric1417
 
Posts: 13
New Member

Hi Amy, I would suggest you stay with the remicade as long as you can. It did wonders for me. Remicade is one med that you cannot stop and then go back too. If you stop it for a period of time, your body will get serious allergic reaction. Ask your doctor if he is aware of these side effects. I know lyris took remicade about 10 years ago and then started it again this year and she had severe reaction. So if you can tolerate it and it is working, it might be your best bet. I can no longer take it because I was off for four years. I dont think remicade is your last option before surgery. Too many meds out there to try. I am starting up the Humira again soon. That could be an option or maybe even Cimzia. I wouldnt take surgery if you havent explored all your options.

Have a great night and take care of yourself.

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