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New diagnosis CD lost and scared

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Crohn's Disease
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Posted 7/31/2008 2:20 AM (GMT 0)

I am newly diagnosed with CD at the end of april actually hospitalized after passing out on tax day! Loss of blood and over 86 pounds in 4 months, sick sick sick. Thought I was going to die.

  Now I know what I have after 9 days in the hospital so I am thankful to be alive but now what? I read and read but I think that scares me more! I have faith in God but it gets hard on the really bad days. I just turned 32 the end of June and I am the mother of 3 wonderful kids 12, 10, and almost 1 year old. I am struggling with family and work and friends and GUILT! I am desperate for real world advice from people who understand. So now what??/ confused

Posted 7/31/2008 2:38 AM (GMT 0)

That is very scary and overwhelming. First, I hope you have a gastro who specilaizes in crohn's. There are alot of meds and therapies out there. You will just have to research and try different ones. Sometimes we feel like nothing will work., but have faith. I understand the guilt, but really, this is something out of your control. You will need your family's support and understanding. I too have three kids (7, 15 and 16)and it is very hard on days when you feel too sick to get out of bed. Not to mention, I also teach. I recently had a re-section and am still healing. My pain is better, but the fatigue is already coming back along with gas and D. There are times I just want to throw my hands up in the air, but then things get better.

Just hang in there and know that you are not alone.

Posted 7/31/2008 2:40 AM (GMT 0)
Welcome to Healingwell! I'm so sorry you were so sick!!! (((Hugs))) Hopefully they have you on some meds???
Try not to stress with it. I know its easier to say then to do. But hopefully you have good doctors that will help
you along the way, as well as all of us here. All you can really do is take care of youself and pray things get
back under control. Don't be scared!! You are not alone. Read and don't be afraid to ask questions.
Posted 7/31/2008 2:42 AM (GMT 0)
I can tell you that you have come to the right place for support. Everyone here is great and they always have great advice and experiences to share. There are people here who really understand what you are going through and I find that just talking to them helps me. I am 32 as well, but I don't have children. It has taken several years for me to get a diagnosis but finally went to the Mayo this summer and they did say I have CD. Just know that there are many people here who are willing to really listen and help!
Posted 7/31/2008 2:42 AM (GMT 0)
Hi Monkeychick:

First, breathe. Allow yourself some space and time to adjust to this new reality. Feel your emotions. It's ok to be scared, and angry and sad. But guilt? Now that's the tough one isn't it. When I feel guilt it is always when I'm thinking of my impact on others, never in terms of my relationship with myself. Why do you feel guilty?

I used to feel guilty because I thought I was a burden to my husband. I used to feel guilty because I was a worry to my mother. I fused to feel guilty because I wasn't always able to do everything I wanted to do with my kids.

I never felt guilty because i worked so hard that I made myself sick. I never felt guilty because when I suppressed and hid my pain so that those around me wouldn't worry it actually made my pain return even stronger.

So why do you feel guilty?

Try to treat yourself as kindly as you would treat a friend who is in the situation you now find yourself in.

And welcome to healing well. You will find many people here willing to offer advice, information and a sympathetic ear.
Posted 7/31/2008 3:15 AM (GMT 0)
Thank you all so very much for the warm welcome!

Belleenstein......you sound sooo much like me with the guilt and family and working sick because I feel I have to. I feel guilt like everyone in going to just plain get sick of me being sick!

I am with a wonderful man that is extremely supportive but it is hard I feel like I let them down all the time I try to do to much and end of worse off trying to live like I am not sick. My friends kind of seem to try to understand but when it comes to trying to make plans they get a little testy, like how will we know if you can make it! Kind of hurt my feelings at first but then I decided they will have to get used to this also, I won't know until the day of our plans how I feel.

I battle sooooo much fatigue will this ever get better? I know I am still severly anemic maybe if that improves I will feel better.

I am seeing a Gastro. Meds scare me!
Posted 7/31/2008 3:39 AM (GMT 0)
Welcome monkeychic! Sorry that you have to join us though!

Sounds like we were diagnosed pretty similarly. I also lost a ton of blood and was hospitalized. I had symptoms and problems for years though. But anyway, yes, when your that anemic, you will be very tired. I lost around half of all the blood in my body. So I had a hard time breathing it was so bad. I still say I should have gotten a blood transfusion, but now am glad I was able to build it back myself. It took me a long time to feel back to "normal". But the fatigue did get better. However fatigue also seems to just come with this disease. I have a lot of days now where I just need a nap.

But know that what your feeling now is completely normal. It's like a mourning process. We are mourning our once healthy self! Once I get in to remission I try not to think about it, take my meds, and enjoy life. But once I flare it's a harsh reminder again, and some of those feelings I get all over again. But it wonderful to hear you have a good man standing by you, a support system will really help get through the rough times. This board is extremely supportive and helpful too. Feel free to post any time!
Posted 7/31/2008 4:01 AM (GMT 0)
Aside from excellent medical care, the single thing that has given me the strength to keep going is the love of those around me. Without my friends, family, and even my pets, I would have broken under the strain of dealing with a chronic illness such as this. Sounds to me like you have both family and friends who love you, and I think that should help.

Unfortunately, each person's disease manifests in a slightly different way, so no one can predict how yours will play out exactly. If you're lucky, you will find a medication that will put you into remission and keep you there. If not, well, it does get easier to manage, even if the symptoms don't improve.
Posted 7/31/2008 5:05 AM (GMT 0)
Welcome monkeychic!

I too used to feel guilty. I still sometimes do. I guess I sometimes feel like I hold my husband back at times, though I try really hard to "suck it up" and be "normal" (whatever that is). We aren't sure if we will be able to have kids due to the instability and severity of my Crohn's, so that weighs on me at times too. I just try and be positive and blog about my disease so family and friends can understand. Starting my blog has definitely given my fam a new perspective on what I go through and also has been very therapeutic for me. The folks here on the HW site are a wealth of information and a great support system! I hope you feel better soon. Keep the faith!

-Emma
Posted 7/31/2008 10:10 PM (GMT 0)
Hi Wow you sure lost alot of weight . Hope you are regaining some lbs. Meds scare us all but sometimes they get us threw alot of bad times. I had lost about 45 lbs. when I first was DX. I did put it back on. Don't be hard on yourself although I think just about everyone here has probably felt useless at times. It's having the patience to wait till were better that we need to keep in mind. Glad you joined us it is so good to know we are all in this together. lol gail
Posted 8/1/2008 12:32 AM (GMT 0)
monkeychic..first cute name...secondly the first time I read what everyone goes threw I felt blessed that I didn't have it as bad as some. I mean I have my own issues with the disease but some people have had horrible, horrible experiences. Don't worry getting threw the initial shock is going to make you stronger :)
Posted 8/1/2008 2:19 AM (GMT 0)
Wow, Monkeychic Love the name. Best thing about being sick: you're not alone!! you've made a great leap of faith by reaching out to us. I too, have the pooping thing, lost 85 lbs, I also have Lupus. I think, sometimes, that I'm not a good wife, mom, friend etc. But you know what, I've learned that with every flare, there is a time of surrender. And a time of great relief from symptoms. So, when you are in that mode, write to us, and we'll dance and shout with you. When you're in pain, we'll comfort you. When you're down in the dumps, about to give up, we'll hold you until you say enough already!! So just remember, you're not alone!!
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