Hi there I am new to this site, and I honestly am just looking for advice and information on Crohns disease. I have been struggling with SOMETHING for the past 5 years... I have had a lot of testing done and also a endoscopy and have not been diagnosed, Have spent thousands of dollars on appointments and testing, but now after research I am wondering if Crohns may be the answer... I am looking to see what the symptoms people have are.. and also how they got diagnosed. A little history is i got really sick after having my son 5 years ago, could barely eat everything made me nausea and sick. I finally got my gallbladder removed and that help for a little while but i do not think was the main problem. After having it removed I felt a little better but still got sick ( diarrhea, nausea, vomiting dizziness). Since then I have been in the emergency room multiple times and all they can figure out is to mask the pain and cramping and diarrhea with meds, Pain meds or they relate it back to my gallbladder surgery and removal.. well that in my eyes is not the case, there's something more serious going on and I can feel it... Kind of like a mothers intuition.. I just am not right something else is going on...No one believes me there's something more serious but I am sick almost daily I am having BAD symptoms and get completely sick and bedridden at least once a week...I need help and My doctors are complete idiots I have been to multiple appointments and tests done any advice or knowledge I can get from someone/anyone that's been diagnosed would help so much and maybe i can steer my specialist in the right directions..Thanks in advance!
Needing Advice and Also opinons
- Thread starter Mvan
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Hi there, and welcome,
I am sorry you are having a difficult time. It does take time to get over surgery so they could be right about your gallbladder. Crohns is more than pain and diarr.. I was originally diagnosed with Diverticulitis and was on meds which did little. Often I went to work without breakfast as I spent a long time in the toilet. 4 years ago, I had severe tummy pain, day and night! Diarr and yet I hadn't eaten. Extreme fatigue and sore mouth. It took over a year before it was diagnosed as Crohns, it is not easy to pick up in tests. A pill cam test showed damage in the ileum. You also have bloody stools. Hopefully, you do not have Crohns as it is difficult to treat. Look at your diet and see if there are particular foods that trigger a bad episode. With me, it is rich creamy sauces, cheesy ones too. Do not worry, as that will not help you either.
Let me know how you are. Best wishes.
:rosette1::welcome::rosette1:
I am sorry you are having a difficult time. It does take time to get over surgery so they could be right about your gallbladder. Crohns is more than pain and diarr.. I was originally diagnosed with Diverticulitis and was on meds which did little. Often I went to work without breakfast as I spent a long time in the toilet. 4 years ago, I had severe tummy pain, day and night! Diarr and yet I hadn't eaten. Extreme fatigue and sore mouth. It took over a year before it was diagnosed as Crohns, it is not easy to pick up in tests. A pill cam test showed damage in the ileum. You also have bloody stools. Hopefully, you do not have Crohns as it is difficult to treat. Look at your diet and see if there are particular foods that trigger a bad episode. With me, it is rich creamy sauces, cheesy ones too. Do not worry, as that will not help you either.
Let me know how you are. Best wishes.
:rosette1::welcome::rosette1:
Thank you, yes I have done different diets and nothing seems to help or make it better. I have tried everything under the sun! Its mostly pain for me in my stomach and diarrhea and horrible fatigue...Its been over 6 years since my surgery and I really don't think that's the case it really seems like its a totally different issue now. I don't eat breakfast right now, nor lunch most days and I still am getting really bad diarrhea and stomach cramping..
do you have a gastro-enterologist? If not, ask for a referral. In the mean time, an easy test could possibly be done, its called Fecal calprotectine. Its a simple stool test to measure inflammation in the colon and it is not expensive. It can help orient towards a diagnosis of an IBD or not.
Thanks this might help a ton once I go back to the doctors! I do have a gio but he was worthless and wouldn't listen to me at all... ill be going back in November
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Hi there,
I get a Faecal Calprotectin test every 4 months as part of my on going checks with my Consultant. I do have Crohns so it is higher than another person without. Unfortunately, my last test was sky high so I am now having further investigations, scans etc. Were you duagnosed with any Bowel disease at all , and are you on meds for it? It certainly sounds as if you should be? I do hope you find a good specialist, that is what you need. Talk about you concerns and ask plenty of questions. Good communication is necessary to get the right treatment and feel better. Let me know how you are.
:
anda::goodluck:
I get a Faecal Calprotectin test every 4 months as part of my on going checks with my Consultant. I do have Crohns so it is higher than another person without. Unfortunately, my last test was sky high so I am now having further investigations, scans etc. Were you duagnosed with any Bowel disease at all , and are you on meds for it? It certainly sounds as if you should be? I do hope you find a good specialist, that is what you need. Talk about you concerns and ask plenty of questions. Good communication is necessary to get the right treatment and feel better. Let me know how you are.
:
anda::goodluck:
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Hi and welcome. I agree with lady organic n honey , the faecal calprotectin test is probably the best way to find out and the least invasive. My crohns was dx by mir/ct scan tho after 3yrs of not knowing what i had. Wish i had known of that test back then.. Good luck x
Its brand new test since a year or 2 only. Im so excited I can use this test now to monitor my condition. Blood works dont reveal anything for me and colonoscopy was my only tool for monitoring, which lead onto flares escalating too much without being fully aware of it or always being in doubts. The FC is a miracle tool for us!
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Hello, new to the forum too. It was difficult to diagnose in my daughter. She was 13 at the time and this was spring of last year. Looking back now, she was exhibiting symptoms early on. And as nurse myself, i wished that i had caught on sooner. If you are thinking Crohn's, first ask your self and family members if anyone in your family on both sides is afflicted with autoimmune disorders such as Crohn's disease, ulcerative colitis, rheumatoid arthritis to name a few. Crohn's is an inherited disease. Both parents has to have the defective gene and both parents has to pass on the defective gene to the offspring for the disease to express itself. In my daughter, we know of no one with Crohn's or ulcerative colitis, so that was the farthest thing from my mind. My daughter will get occassional stomach cramps in the beginning, and she has loud bowel sounds--always had. A few months before the diagnosis, she started to have severe abdominal pain, nausea and vomitting. A few trips to the ER and doctors' visit only come up with stomach flu. The stomach pain would come and go. After one particularly violent episode that resolved spontaneously, she passed a green-color stools. Long story short, an ultrasound of her abdomen revealed what they thought was telescoping of her terminal ileum. CT and MRI confirmed the Crohn's diagnosis. With regards to the unfortunate inheritance, we have a family history of rheumatoid arthritis--my husband and I, and my daughter was the unlucky recipient of the defective gene.
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Thank you all so much for your help, I will be going back and seeing a different specialist in the beginning of November, ( I do not have insurance due to changing of jobs) then I hope I can convince them to maybe do some of these testing's to see if I have crohns. I do know that my grandma has issues and so does my mom and on occasion my sister also. But I am far worse then any of them are, sick at least 3-4 times a week with flare ups that make me bed ridden of sickness.
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Hi Mvan you are welcome n best of luck. Keep us informed how you go on. ...
My GI asked me once or twice if a stress preceded my flare. I didnt have any particular stress before diagnosis. but this seems like a thing some patients share. However I would qualify for nervous/anxious type of person. so i could say I put myself under mild chronic stress basically all my life. At diagnosis, i was in College stressing to perform for perfect grades. Have been trying to control and manage it since diagnosis. Its hard to change a personality, but I act a lot on my lifestyle and environment to favor a relaxing way of living.
You sound exactly like me I do get overly worked up, I have a lot of stress in my life and yesterday I had a bad bad flare up ( I am not diagnosed with Crohns yet still waiting on testing) but i do think i have it, i was very very stressed out yesterday and i had a horrible flare up last night bad bad bad stomach cramping and also diarrhea, made me so miserable!
My doctor told me that if I reduce my stress, exercise more regularly and continue my paleo diet , to improve crohns symptoms, then my secondary infections should clear up. I've bean a chef and business owner for 20 and 15 years respectively and always been under a lot of stress. I was diagnosed 3 months ago with crohns after a colonoscopy.
The prep is the worst part. There is only a very slight chance that there may be complications and my gastroenterologist said he has never had any. Don't stress too much.
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Hi stress can be a big part of flares for some . I used to stress alot years ago n it may have caused my symptoms to be worse. Since i had my op i have retrained my self to not stress . I just think if i have surrived all that i have, then everything else will be a doddle. No point stressing it will all be ok somehow. No flares in 20mths ish
The prep is the worse. I struggle to drink that much in that time scale. It does taste ucky which dont help. The vanilla flavour is the worst , plain is better n add some juice/cordial.
Best of luck
The prep is the worse. I struggle to drink that much in that time scale. It does taste ucky which dont help. The vanilla flavour is the worst , plain is better n add some juice/cordial.
Best of luck
Hi stress can be a big part of flares for some . I used to stress alot years ago n it may have caused my symptoms to be worse. Since i had my op i have retrained my self to not stress . I just think if i have surrived all that i have, then everything else will be a doddle. No point stressing it will all be ok somehow. No flares in 20mths ish
The prep is the worse. I struggle to drink that much in that time scale. It does taste ucky which dont help. The vanilla flavour is the worst , plain is better n add some juice/cordial.
Best of luck
Thanks heaps.
I've suffered from crohns for about 25 years I think, just never knew what it was. Not a lot of help. It explained a lot that's for sure!
In my profession and industry, high levels of stress just come with the territory. I've always thought I handled well but was probably kidding myself with the amount I've put myself through the years. I was quite anxious when I was a teenager but now I'm laid back. I'm now looking at studying nutrition and getting out of hospitality. I just don't know if the money will be there though which will add more stress. Any advice on reducing stress would be appreciated.
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Hi your welcome, some have tried meditation,yoga, herbal remedies also chamomile tea can help reduce stress along with a few other good things. That might be worth a try as its pretty cheap n wont take up any precious rest time. Best wishes 
So I went to the specialist this morning, they scheduled me for a colonoscopy and also I have to do stool samples and turn them in for further testing/ infections. I was very excited about getting some where with this new doctors but now after I have spoke with the financial advisor there at the office she informed me I would have to pay 1/2 of my deductible before I can have the appointment. Which is $500... I don't have a extra 500 laying around im still paying off my last years appointment for the endoscopy. I am so upset and so frustrated, my doctor seemed to really want to help me and even booked my appointment for me within two weeks ( which they are actually scheduled out till January) and she wanted me to get this procedure done right away to help me pin point whats going no and really look deeper. I just don't know what to do!!
I just don't know what to do!!
