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Newly Diagnosed with Crohn's and not happy about it
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JavaMamma27 posted:
I was diagnosed last week with Crohn's last week following a colonoscopoy and biopsy. This was after 2 months of severe headaches and migraines, 2 seizures, body aches, nausea and vomiting. I have been unable to work since 10/03 when I left in an ambulance having seizures. I have had CT scans, MRI's, LP, EEG EKG, more than 20 different bloods tests. Finally we found Crohn's. It is at least moderate, pobssibly severe and needing surgery. I will do the barium swallow tomorrow to see the extent of the damage. I have had rectal bleeding since I was 10- so 20 years now, and have been living with Crohn's symptoms since I was a teenager- just never knew what was going on.

I was told by my Dr. that I need to go on Immuno-Suppresant drugs soon. I am TERRIFIED. I work retail and I am thinking about quiting my job b/c of the risk of exposure to infections when on Remicade or Humira.

I started Pentasa last wednesday. On thursday I had to go to the ER for painkillers b.c of an extreamly painful flare-up. (I am having about 15 flare-ups a year right now). The ER Dr also put me on Prednisone. So far, I don't feel better. I feel the same and I am frustrated.

I am just looking to feel like I am not alone. I know NO ONE with Crohn's. I felt blind-sided by this. We where looking for Celiac's. My Aunt has Celiacs and is now dying from lymphoma. No celiac's YET, but I am gluten-sensative and have started a gluten-free diet.

If you made it this far, thank you.

Steph
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sheba_q responded:
I know that feeling of being "the only one". I've had ulcerative colitis for almost 20 years now and I've only ever met a few people with Crohn's (that I know of anyway). I'm sure there are more people with an IBD out there than that, but we don't tend to announce it.

Right now you sound like you're in overload - you finally got an answer and now all the possible treatments/side effects/etc have overloaded your brain. Just take a moment to slow down - you don't have to deal with everything today.

With all medications you have to give it some time to work. This didn't just start yesterday and it's not going to go away after taking one pill (as much as we wish it would). The immune suppressants aren't that bad as you're taking a low dose of them. Sure you'll be more likely to get a cold, but you won't get every one that comes around. With some basic preventative measures you won't be that much worse off than the average person is.

Have you started a food diary to see what foods set your Crohn's off? Are you taking any vitamins, supplements or anything else along those lines?

 
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kaj2313 replied to sheba_q's response:
Hey Don't give up! I was in the same boat. Not as bad, but years of having Crohns and not knowing! I had a resection in Feb and am doing great now. I'm on Methotrxca (sp) and I work with special needs children and waitress. I'm doing fine, just keep washing hands. I needed the job out let, more so when I was real sick it gave me a reason to get up in the morning! Hang in there better times will come now that you know what's going on!
 
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mindyj1971 responded:
I'm so glad that you are on here! I remember joining this site the day I got out of the hospital. I was diagnosed with Crohn's in September 2008 when I got so dehydrated that I ended up in the ER. I had symptoms for about 8 months prior to that, I just didn't do anything about it. By the time I was diagnosed I already had a partial blockage and a fistula that was developing. It's been a nightmare since and I am so thankful for the people on this board! I've never been in remission and have had 3 surgeries so far. Each time, Crohn's has come back before I can even get through my recovery period. I am having more surgery 2 weeks from today to have my colon and rectum removed. Hopefully, this will be remission for me! You are definitely not alone! I also take Pentasa, Remicade and prednisone right now. I can't believe that you are still working! That must be so tough on you! I was a Medical Assistant for 12 years prior to my diagnosis. I had to file for disability and it was approved, thank goodness! I hope to be able to get back to work sometime soon! I miss my patients and colleagues!

Please keep coming on here to vent and let us know how you are doing! You do have a lot on your plate right now and it will take a while for it to all sink in. Take care of yourself:)

HUGS!
Mindy
 
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KhrystheanDawn responded:
Javamamma27{ steph}
Im sorry to hear you were dignosed with Crohns Disease. On top of the other problems you were dealing with, sweetheart I do understand the fear/anxity that comes along with this illness and it can be quite overwhelming at times , I too suffer from Crohns , I was dignosed in my early 20's and since then now 36 Ive had 4 majopy surgeries and as of now on the humiria treatment and trying to regain somewhat of a control on it...
Please try not to let the fear/anxiety rule ur life as it did mine for years with the right diet ,team of doctors and support from ur family and friends you can find a peace in the hardest most difficult times . this isnt no means a medical advice lol just one crohnie to another .. I just know how difficult it can be and how frustrating and emotionally dibaltitaing it can be and with you getting a dignose just wanted to lend u a hand and heart and know that ur not on ur journey alone~
keep us posted on ur journey ... May God bless you and you and your family............Kris
 
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cook1958 responded:
Please don't worry to much about the risk of infections. I work in a middle school, and it never has been a problem for me. Just use all the right precautions. Also when I do get sick, it was the same as if I wasn't taking the drugs. First and foremost you have to start feeling better and living. Hugs.
 
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blu2lip responded:
Hi JavaMamma27 so sorry to hear that u r feeling alone. I have had crohns for 35 years got it at age 17 had lots of prednisone and other drugs. 10 years later had surgery i was so sick i weighed 85lbs was going into liver failure would have died. After recovering i felt great i did not even care about the bag my husband was just so glad i was better. I stayed away from the support association for 20 years did not want to talk to anyone with crohns or colitis. wanted to forget. Ignore. pretend it never happened. I was isolating myself. should have never done that. Now i am going to the meetings and having lots of chats with people who are like me. So please do not isolate yourself. Join the association of Crohns Disease. U will find friends there that know exactly what u r going through and how u feel. Do not hesitate like i did.
 
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keke2828 responded:
hello, im almost 20 years old and female and i discovered that last year i was diagnosed with crohns. i have had alot of problems and complications with my body. i know foods that i cant eat now which is helpful but frustrating. i have alot of pain,bathroom problems, nausea, body aching, and vomitting. i have lost 40 lbs in one year because of this. im under 100 lbs but none seems to understand what iim going through. i try and explain to people but they just look at me differntly since im young and short, if youy know what im getting at. i eat and eat all the time but dont put any weight on. ill eat 4 bowls of cearel then wait and eat a sandwhich and so forth but i havnt gain any weight. i have nausea and pain medication. i recently found out that i lost my health care so im struggling everyday to make sure i dont have any problems and or with my body. i hope someone can talk to me and id like to hear more from people who have this. i feel alone.
 
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mindyj1971 replied to keke2828's response:
Welcome keke2828! You are never alone! I'm so glad that you are here with us! I was diagnosed 2 years ago with Crohn's; I have had just about every complication imaginable (fistulas, abscesses, fissures)....I have not responded well to meds, have had 3 surgeries and am having my colon and rectum removed next Tuesday. I already have a colostomy and it was supposed to be temporary, but Crohn's attacked that, too, and now it can't be reversed which is why I am having my entire colon removed. It has been quite the rollercoaster! Like you, I lost a ton of weight in that first year. I was down to 98 pounds in January of this year. I drink lots of BOOST for the nutrition and extra calories. I can not eat solid food without having to take phenergan for the nausea. Every time! The only time I seem to gain weight is when I am on steroids....I have been on them since April and have managed to gain back about 30 pounds. But, now I have osteopenia (bone thinning) from the constant use of the steroids! Can't win! We all know what you are going through! Please continue to vent all of your frustrations with us.....as much as our family and friends want to be there for us there is just no way for them to truly understand the daily struggles we face. I get so dehydrated from this on a weekly basis....some days it is all I can do to get my teeth brushed. I put the kids on the bus this morning and came back inside and went back to bed for 3 more hours! I just could not function!
I remember the day that I was diagosed in the ER.....when I got home I came directly to this site and signed up on this board! The people here saved my sanity a million times.....they still do! You are at the right place! You are not alone....someone here has been through it or is going through it with you!


Take care and big hugs to you!
Looking forward to getting to know you!
Mindy
 
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Elizabeth_WebMD_Staff responded:
Hi JavaMamma,

I just wanted to welcome you. As you can see, you will have a great support system and will receive wonderful advice from this community. You are definately not alone here.

Keep us posted on how you are doing and how you are feeling,
Elizabeth


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