Crohn's Disease Support Group

I am a 29 year old female who has been suffering since I was a kid. I have had health issues since I was about 10 years old, mostly digestive issues. There have been so many days (for years) where I feel like I am just ready to roll over and give up. I have asked my doctors for help and they blow me off...telling me to lose weight. Fine, I will do everything they ask. When I do, and nothing changes, I am accused of not trying hard enough. Then when I lose weight rapidly (and not because I was trying), I am doing everything wrong. I cant win. I am in pain 24/7. I cant go out to eat with friends because I am afraid I may end up stuck in a bathroom. Most days I dont have the energy to even get out of bed. I just want to lay there and cry the day away because I cant seem to move my body out of bed. I have been working towards med school for over 10 years. It seems like I am running in place because I am too sick to do anything else. I am actually pissed off that this disease is taking over my life.

So here is my new start to try to take back my life. I am sitting here, in pain. Mad as hell. And ready to do anything I can to make the rest of my life wonderful. I am changing my insurance company so that I can go to better doctors. I am going to a PCP who has known my family for years....who I know will actually listen to me. I exercise on days when I have energy and just try to relax on days when I dont. I eat as healthy as I can. And now I am here, asking for help and advice...for the first time ever. No one but my father knows the hell I have been living. No one knows I am sick. So to talk about this with people and to ask for help is way out of my comfy zone. Anything that anyone can share with me would be soooo appreciated. What should I ask my new doctor? What can I do at home to help on my down days? I am open to any suggestions. I just want to have my life back. I want to be happy. PLEASE HELP!

I literally feel your pain.

I was in my 20's when I got CD and there was little out there. First can you ask your PCP to recommend a GI, whom treats problems of the digestive system to diagnose if you have CD or something else. Tell the GI exactly what you said in this missive--that you have been shutting yourself in because of the inertia and pain. When the GI properly diagnoses your ailment, s/he can prescribe a med so you can function in life. Have your father go with you. There is nothing wrong with a family member going with you and helping you explain what is going the illness and the GI may take more of an interest in your case.

Second, build a support network of people(family and friends)--don't go through this alone! It just makes the inertia and pain worse. This, psychologically, helps you get through the illness. Definitely, myself and others in this wonderful network her at MD Junction can be your online support network. We know the pain you are going through and we can give advice and support here.

And read up on this disease and if your friends are truly your friends, they will be empathetic to your plight.

Please keep us posted and I am sure your will get other responses.

All the best and do not give up!

One more thing--there are numerous meds out there to treat this disease then when I first was struck with CD.

Namaste!

I had a doctor when I was about 19 who told me I had Chrons. She suddenly stop practicing because she found out she had cancer. So the one person who wanted to help me is now gone. Other doctors have put me on so many different meds to "try to help" with my issues and none seem to have done anything for me.

I have never been one to be public about my struggle because I dont want to come off as someone looking for attention or complaining too much. My sister has MD. My mom, brother and other sister had/have Chrons as well. (I say had because my mother passed from cancer) I guess I didnt want to be just another person in the family with an issue either.

Thank you for your help!

I am sorry for your situation. I am sure others in this forum can offer other suggestions.

But, you should never feel you are "complaining"- your health is very important.

I think alot of us with CD come across as "complainers" to others who have NO IDEA what we go through. I used to get cramps that would send me to the floor and have me in tears in less than 15seconds. This would happen in public and I would try my best just to hold on to my husband until it passed instead of going to the floor. I never went anywhere if there wasnt a bathroom CLOSE and I couldnt go to restaurants with friends then go out b/c I would need to go straight home to the bathroom. I often got called anorexic when I would loose weight from being sick and it was very frustrating.

Please know you are NOT alone. We understand the pain and inconvenience of CD. It's a hard struggle but we are all helping each other get through it.

Definately ask your MD about a GI in your area. Once you are diagnosed they can get you on a road to a more "normal" life. Notice i said MORE normal not just "normal". I am so thankful for my GI. It took him a while to realize the medications I needed but once he did I am living now without daily pain. It's the best I've felt in years!

I also am on an anti anxiety/depressant and it's helped my attitude with almost everything including CD and now I feel like I am controling my life and my life is not controlling me!

Welcome to the crohns family. I know you will find much support here. I am so sorry you have to go thru all the issues that this disease entails. I get help with some pain meds and muscle relaxants and am still trying other meds for c/d. I take nausia meds plus I try and eat as well as possible. I started taking anti depressents about 10 months ago and they have helped me alot. Sending you prayers, and hoping you have a pain free day!

My boyfriend seemed to never complain, until just recently. I used to think it was him using it as an excuse...but I think it's just because it's gotten worse. His stress level has become increasingly worse over the past year. I don't know how to help!!

I know when I am stressed out, everything seems to be worse. My energy level is pretty much not there at all and my pain level is kicking in my front teeth its so high. I know for me, its nice to have someone ask me if they can help me do something so I dont feel like I have to do it all. Takes a weight off my shoulders. But then I also feel guilty and I tend to tell people I am fine when Im really not. Its a tough spot to be in. I hope you can help him take some stress off his shoulders. Might do wonders for him.

a21racergirl -- We are here and we feel your pain!!!!!!!!!!!!! My only suggestion is to keep on talking and take it easy on yourself, girl!!!! Glad you posted and welcome, welcome with open arms!!!!!

kttinydancer -- you can help him, just by being by his side, listen to his complaints and if he can't do something, do it for him-he'll so appreciate it and love you so much for it (he already does and you love him very much too-it definitely shows!!!!!!)

Maybe you can help him the most too, if you remember to remain calm and think before you react to his stressyness-he'll follow your tone and cool off quick! If you wanna take that extra step, you can help him keep hydrated and comfortable while he's going through his stuff with the Crohn's. There's nothing for you to fix with him, unfortunately (don't put it all on your shoulders, you angel!). It takes his Drs. appointments, meds, recovery time and you by his side for him to really heal. You are already the supportive girlfriend-don't doubt that-you are here!!!! I think you also need to remember to take care of yourself too, because if you are sick, you'll be of no use to him, when he really needs you! Your health is important too-not only for that reason, but for your own sanity and well being. Take care and keep posting

You are both in my thoughts today! xoxo