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 All I can say is that Im scared and happy at the same time, cause now I know what I have. Instead of having doctors saying we cant find anything wrong with you! And friend and family look at you funny.  My boyfriend use to think I was one of those crazy people who like attention to much. How frustrating it is to think its all in my head.  And now after all the test they finnaily found my problem. After a CT scan and a Upper and Lower GI (Please make sure you have these done cause it is the only way they can for sure tell). I have IBD, Crohns Disease and Celiac disease I prefer not to have them at all cause the pain sometime is unbearable. It brings tears to my eyes cause I feel so helpless and everyone around me are so kind and tell me that they had someone in there family that had it. So its nice to know there are people out there to talk too. Im turning 40 so now I think gee happy birthday to me! How I am happy to be alive but how difficult its gonna be to work or play or even go to the store. I have too wonderful children son that 19 and a daughter who is 17, Im so ecited to see her graduate this week. In the past 2 months Ive have been on 7 different kinds of meds for pain and sleep. I just want to have the pain gone and to be able to sleep would be so very nice. I manage to go back to work for too days. but I find I cannot work with pain and I cant take my meds at work for safety reason. Dose someone have any ideas that might help me at lease sleep better at night.  Ive tryed excerising before bed like yoga when im not in pain. It sometimes hurt but I found with some of the pain meds I get restless and anxiety stressed out about the little things.  I wonder if this is normal.

 

 Reply posted for susanapriest.

all i can say is that im scared and happy at the same time, cause now i know what i have. instead of having doctors saying we cant find anything wrong with you! and friend and family look at you funny.  my boyfriend use to think i was one of those crazy people who like attention to much. how frustrating it is to think its all in my head.

oh my god,  are you my other half!  i broke up with my boyfriend of almost a third of my life (we started dating when i was almost 15 and broke up when i was almost 21) because he kept saying "if they say there's nothing wrong with you, why the *** do you keep going to different doctors?  are you crazy... you want something to be wrong with you but there ain't nothin there sweetheart!"  needless to say, that was the end of him.  haha

 Reply posted for susanapriest.

I have had crohn's disease for 4 years. I completely understand about being happy about knowing whats wrong and what you can do about it. it took 6 er visits with severe pain and not eating anything.  they took out my gull baldder thing that was it but it mad it much worse. after 9 weeks in the hospital and 3 more surgeries i fianlly got it under control. thankfully i have boyfriend who tries very hard to help me and does pretty good at it.  sometimes i still have bad days and there are days where i struggle to eat enough food or to have enough engery to do more than make my couch warm but i work at trying to keep things evened out. i would love to chat with you more you can reach me at chandra_kotos@yahoo.com. we can chat it up and i can give you the recicpie for an herbal tea that my bf makes for me that helps calm my syptoms.

 Reply posted for Twifreak.

Very sorry to hear your dad dosnt understand.  Ask your doctor if there is a suport group in your town.  You can talk to your doctor See if you and your doctor can talk your dad into going, so he may better understand you and what your going throw.  :(

 Reply posted for susanapriest.

What helps me sleep is xanax and lunesta. The xanax will help with the anxiety  and stress and it will relax you to the point you are tired and Lunesta will just put you right to bed. My thing is .. at night I take percocet around 6:00ish for the pain and a few hours (around 9:00pm) later take a xanax then my Lunesta like a half an hour after that and I sleep like a baby. Hope this helps! good luck!!

 Reply posted for susanapriest.

It's really interesting to read about my life on this forum and I didn't write it.  I was 6 weeks shy of 40 when I caught a cold.  This cold turned into 4 months of pure water coming out of my rear. (That part is better, not gone but better) I lost 20 #'s without trying. (I wish they stayed off--was on pred) I feel like I haven't slept for about 9 months.Stomach hurts all of the time and I feel like I have the joints of a 90 year old woman.

My husband believes that I am sick but does not believe that I feel as bad as I do and that I'm using it as an excuse.

I still work 40 hours or more a week and still try to take care of the household.

Doc is talking Remicade but I'm not sure about this.

Good luck to us all.

Chelli

 Reply posted for susanapriest.

Hi. I am 15 years old and I have Crohns too. My father first also thought I just wanted attention and when I was diagnosed, he didn't believe me. It is so frustrating because no matter what I do, he doesn't believe me.

 Reply posted for susanapriest.

I forgot to ask you.....Do you see an Integrative Medicine Physician??

I started seeing one and he has many ideas for patients with IBD.

Have you heard of Low Dose Naltrexone?? It is being used by Patients with autoimmune disorders (including Chrone's) and Integrative Medicine Physicians are ordering it. It stops inflammation..which would help keep you in remission.

If you want to check the website, here is the link

http://www.lowdosenaltrexone.org/

Best Wishes for Achieving Wellness,

SylviaG :)

Florida

 Reply posted for susanapriest.

Hi There,

I have UC (since 1997) and have Celiac Disease (or gluten sensitivity). My Aunt had Chrone's Disease and my father had pancreatic cancer (he lived for 5 years).

 I am being followed by a well respected Celiac Specialist in Atlanta. I understand the pain and suffering you have dealt with.  I developed neurological problems-myoclonus (periodic limb movement at sleep onset) 2.5 years ago. I went to nine doctors before finally seeing my former specialist (I had left Atlanta several years ago). I was so sleep deprived from the myoclonus, I thought I was going to have a nervous breakdown.  I lost ten lbs, had iron deficincy anemia (low ferrtin) and had to have an iron infusion. My doctor could not believe how much I had suffered and gone undiagnosed.   I am still having myoclonus but not as severe. ...in the process of seeing a well respected nutritionist to have a special nutrient lab series. My hard lesson: it's my life and my body. I know when something is terribly wrong and if a doctor is not open to listen, I am doing my own research and taking my info to a real expert with patient skills.

How is your gluten free diet going? I had to stop dairy, corn, and soy as well.

If you need support on the "Celiac side", www.glutenfreeandbeyond.com and www.glutenzap.com are great resources for me!

SylviaG :)

Florida  

 Reply posted for susanapriest.

Definately don't exercise before bed that starts up your endorphines and wakes you up. I have trouble sleeping most nights. I'll feel tired then I lie down and I feel restless. I've taken tylenol pm, benadryl, and phenergan to help. If you can't take the tylenol pm due to tylenol in your pain medication i'd try an over the counter sleep aid if that doesn't work have your doctor suggest a medication.

 Reply posted for susanapriest.

Hi susanapriest... sorry to hear about your diagnosis! I'm 45 and have battled with Crohn's Disease (IBD) since 2005 and just learned of IBS in other areas of the digestive tract, several months ago. To answer your question re sleeping - I take Zolpidem (generic for Ambien) of which my primary physician prescribed for me several years ago. Helps me to sleep through my IBD and IBS when I go through my flares. Did Tylenol PM for several years and started becoming so immune to them, they no longer helped. Talk to your Dr about a sleep pill. I had to resign from work in 2005 and then again back in October 2008 :( due to flares, pains, and discomfort. Difficult disease and difficult for others to understand. Stay in touch with ccfa community and you'll get through this too, One Day At A Time :) Good luck to you...  

 Reply posted for susanapriest.

I understand your frustration and happiness. I felt and still feel the same way. There are times I am so tired, I just can't get up. I have trouble sleeping because I feel pain when I lay a certain way. I take Tylenol PM which helps. Sometimes, it doesn't and I just tell myself that I am going to be really tired the next day.

It is frustrating to have good days and no pain. It makes me think that everything is Ok. Then the next thing I know I am doubled over in pain wishing I could just rip everything out.

Before I was diagnosed, I thought everyone broke out into a sweat, disabling stomach cramps, and having to go poop immediately. I just thought it was normal. Well, I now know I was wrong. I will be 39 this year and I have always said women grow older like wine. Full bodied, smooth and worth every expensive penny.  

I would say try Tylenol PM or their new Simply Sleep which is the same as the Tylenol PM without the Tylenol.