I am a 49 year old female and have recently been diagnosed with Crohn's after several years of being mis-diagnosed. I have been suffering symptoms since I was a teenager and I had been told I had everything from Lupus to IBD to a personality disorder (psychosomatic symptoms/anxiety!). During this time I became progressivly worse and the night pain I had been having increased in intensity and duration. I am in the process now of getting the upper and lower GI work-up and blood tests. I realize this disease is life-changing and am quite upset at what my future may hold. It is increasingly difficult to drag myself to work after a bout of pain and fatigue. As the primary source of income for my family, I am very scared about having to work part time or not at all. I am wondering too if my experience with pain is shared by others. It nearly always hits me at night and is so intense I sometimes pass out or cannot walk. It hurts through my entire abdomen and up my back. I get cold and clammy. It can last a few hours. I usually drink Pepto of Maalox for relief but often it does not work. My Dr. suggested Levbid which did seem to help during my last attack. The next day I am really tired and unable to eat, sometimes I have diahrrhea but usually just black stools for a week or so after the attack. I am weak, fall asleep at work and get red bumps on my skin. Does any of this sound familiar? I can deal with the on/off diahrrhea and other symptoms but the pain is such that I am really afraid that one day it will not pass and I will have it forever.... Thanks for reading my story and I look forward to learning more about this disease and how people cope with it through this forum.
Newly Diagnosed
- Thread starter kimd47
- Start date
Help Support Crohn's Disease Forum:
Astra
Moderator
- Joined
- Jan 21, 2010
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Hiya Kim
and welcome
Good to have you here, you'll learn all you need to know about IBD from us all!
So, did the doc give you any IBD meds? Did you see a gastro/specialist in IBD?
Not really sure Levbid will be helping you much, especially if you have dx of Crohns, It's for spasms and cramps, which will of course help, but if there's inflammation or narrowing going on, Levbid shouldn't be taken.
Try not to fret, your story is the same as mine, and the same age, and I work full time, and in time you will be able to manage this disease, but you need to have a decent meds regime in order to do this.
Any questions, just shout!
lotsa luv
Joan xxx
and welcome
Good to have you here, you'll learn all you need to know about IBD from us all!
So, did the doc give you any IBD meds? Did you see a gastro/specialist in IBD?
Not really sure Levbid will be helping you much, especially if you have dx of Crohns, It's for spasms and cramps, which will of course help, but if there's inflammation or narrowing going on, Levbid shouldn't be taken.
Try not to fret, your story is the same as mine, and the same age, and I work full time, and in time you will be able to manage this disease, but you need to have a decent meds regime in order to do this.
Any questions, just shout!
lotsa luv
Joan xxx
Angrybird
Moderator
Hi Kim and welcome :hug: I am really sorry you are having such a bad time of it and the stress this must be adding to your life is not doing you any favours either. I would also ask about was meds for the IBD you are being given if any. Surely by now they should perhaps have you on steroids as given your symptoms you could have a lot of inflammation going on and these are great at sorting this out. If you can get straight onto your doc tomorrow as I really think they need to be getting something sorted for you ASAP. Changes in you skin is something that can happen with active disease, I had big round purple welts come up on my legs when I was first diagnosed. Let us know how you get on.
rygon
Moderator
- Joined
- Jan 31, 2010
- Messages
- 2,301
Even though its life changing you are already having the problems now so if you do get diagnosed it wont make it any worse, it will just allow you to concentrate on the disease itself (whether through drugs or diet etc)
Welocme to the forum anyway and hope its of some use to you
Welocme to the forum anyway and hope its of some use to you
David
Co-Founder
Greetings Kim and welcome,
I think I had the same thoughts as Astra when I read your thread. I'm thinking you have some narrowing of your intestines due to inflammation and possibly scarring. Have you had a CT scan or any barium tests?
What country are you in? USA, UK, or?
The bumps on your skin and fatigue are very likely due to vitamin deficiency which is VERY common in people with Crohn's Disease. DEMAND that your vitamin D, vitamin B12, and folate levels be tested at a minimum.
Keep us updated! We're here for you
I think I had the same thoughts as Astra when I read your thread. I'm thinking you have some narrowing of your intestines due to inflammation and possibly scarring. Have you had a CT scan or any barium tests?
What country are you in? USA, UK, or?
The bumps on your skin and fatigue are very likely due to vitamin deficiency which is VERY common in people with Crohn's Disease. DEMAND that your vitamin D, vitamin B12, and folate levels be tested at a minimum.
Keep us updated! We're here for you
Thanks everyone
Thanks for all the feedback and support, I really am feeling a bit better about my diagnosis. So far, they do not have me on meds, my gastro Dr. wants to hold off until she sees the results of my colonoscopy, endoscopy, X-rays and camera pill. She prescribed Levbid for bouts of diharrhea and the night pain. I have had a history of granuloma lesions from past endoscopies but I moved to another state soon after the studies were done and when my records transferred they got lost in a file - hence the misdagnosis. Finally, I asked for a new Dr. and told her about the lesions and she dug until she found the files in my computer records, after she looked at them she said it could only be Crohn's with the type of lesions and some bloodwork findings. Now she wants to see how it has progressed and what part of my intestine it is attacking. My diet has been limited the past few years to yogurt, strained fruit juice, tapioca pudding, cereal and crackers. I live in Pennsylvania, USA. Again, thanks for the feedback and support, I have been reading the posts on this forum and am learning about this disease and am really feeling better about things - you all have such a good attitude about it and it is great to have a place to talk to others with Crohn's.
Thanks for all the feedback and support, I really am feeling a bit better about my diagnosis. So far, they do not have me on meds, my gastro Dr. wants to hold off until she sees the results of my colonoscopy, endoscopy, X-rays and camera pill. She prescribed Levbid for bouts of diharrhea and the night pain. I have had a history of granuloma lesions from past endoscopies but I moved to another state soon after the studies were done and when my records transferred they got lost in a file - hence the misdagnosis. Finally, I asked for a new Dr. and told her about the lesions and she dug until she found the files in my computer records, after she looked at them she said it could only be Crohn's with the type of lesions and some bloodwork findings. Now she wants to see how it has progressed and what part of my intestine it is attacking. My diet has been limited the past few years to yogurt, strained fruit juice, tapioca pudding, cereal and crackers. I live in Pennsylvania, USA. Again, thanks for the feedback and support, I have been reading the posts on this forum and am learning about this disease and am really feeling better about things - you all have such a good attitude about it and it is great to have a place to talk to others with Crohn's.
