I am a new member and I am so sick and tired of being so sick and tired all the time. I am just looking for some help, advice, a shoulder to cry on... :banana:
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Sick -N- Tired
- Thread starter ShanBanana
- Start date
I am waiting on final results from the colonoscopy. My doc believes that I may have Crohn's.
Hi Shan,
I'm new to the forum myself, and can definitely relate with your situation. I'm also undiagnosed and the doctors suspect crohns. I'm currently waiting on a barium x ray, and have had a normal colonoscopy test a couple of months ago. I wanted to share my situation with you in the hope that you realise you are neither alone in your suffering nor are you isolated with the feelings you are experiencing.
I've been having symptoms for almost a year now and can feel very frustrated all the time if I let it get the better of me, I'm sick of waking in agony everyday. I just keep telling myself that there are people that are suffering more so than me, and that I will get a dianosis one day. I'm sorry if this seems like me ranting at you, it's not intended that way I promise! I just hoped that my feelings may be similar to yours?
If you want a shoulder to cry on I'm always here, and there are threads in the forum about being undianosed, and there's even a place to rant! Please hang in there, and share your feelings if you feel comfortable doing so, it really does help! I'm sorry I can't offer some more practical advice but I'm very new to this myself! I'm sure others will be on here who have been through the same and are diagnosed, they're a friendly bunch I've found!
It's nice to meet you, and take care of yourself,
Craig
I'm new to the forum myself, and can definitely relate with your situation. I'm also undiagnosed and the doctors suspect crohns. I'm currently waiting on a barium x ray, and have had a normal colonoscopy test a couple of months ago. I wanted to share my situation with you in the hope that you realise you are neither alone in your suffering nor are you isolated with the feelings you are experiencing.
I've been having symptoms for almost a year now and can feel very frustrated all the time if I let it get the better of me, I'm sick of waking in agony everyday. I just keep telling myself that there are people that are suffering more so than me, and that I will get a dianosis one day. I'm sorry if this seems like me ranting at you, it's not intended that way I promise! I just hoped that my feelings may be similar to yours?
If you want a shoulder to cry on I'm always here, and there are threads in the forum about being undianosed, and there's even a place to rant! Please hang in there, and share your feelings if you feel comfortable doing so, it really does help! I'm sorry I can't offer some more practical advice but I'm very new to this myself! I'm sure others will be on here who have been through the same and are diagnosed, they're a friendly bunch I've found!
It's nice to meet you, and take care of yourself,
Craig
Thank you Craig! That means a lot!!
Just found out today that my colonoscopy came back normal- REALLY? Ok, so what is wrong with me??? My doctor is baffled. I don't know anymore. I am so tired, stomach hurts all the time, and so SO nauseos. Ugh! He put me on Zofran twice daily and probiotics. I hope that helps.
Does anyone else take probiotics- do they help??
Just found out today that my colonoscopy came back normal- REALLY? Ok, so what is wrong with me??? My doctor is baffled. I don't know anymore. I am so tired, stomach hurts all the time, and so SO nauseos. Ugh! He put me on Zofran twice daily and probiotics. I hope that helps.
Does anyone else take probiotics- do they help??
Hi Shan,
I do have a confirmed diagnosis of Crohn's, but even during times of remission I was feeling HORRIBLE. I was vomiting daily, swelling, nauseous and had terrible heart burn all the time. My doctors had no idea what was wrong with me and couldn't figure out how I was having symptoms even while doing all the 'right' things for my Crohn's.
Eight months I started the Specific Carbohydrate Diet (used a lot for IBD)... Within 2 weeks I felt like a new person. Come to find out (through a lot of testing, trying and eliminating foods) I have really terrible gluten, corn, and dairy intolerances. While this is somewhat common in Crohn's (or at least to have poor general digestion) it can occur in others without Crohn's. My mom and daughter are both gluten free now and doing much better for it.
All of that said (and not to scare you), but I had a clean colonoscopy 3 years before finally being diagnosed - my Crohn's is in my small bowel which isn't visible in a scope. If you are having fevers, bleeding, or wave-like stomach cramps GET A SECOND OPINION... If I had, I may not have ended up in surgery. Doctors really are just as fallible as the rest of us. Good luck!
I do have a confirmed diagnosis of Crohn's, but even during times of remission I was feeling HORRIBLE. I was vomiting daily, swelling, nauseous and had terrible heart burn all the time. My doctors had no idea what was wrong with me and couldn't figure out how I was having symptoms even while doing all the 'right' things for my Crohn's.
Eight months I started the Specific Carbohydrate Diet (used a lot for IBD)... Within 2 weeks I felt like a new person. Come to find out (through a lot of testing, trying and eliminating foods) I have really terrible gluten, corn, and dairy intolerances. While this is somewhat common in Crohn's (or at least to have poor general digestion) it can occur in others without Crohn's. My mom and daughter are both gluten free now and doing much better for it.
All of that said (and not to scare you), but I had a clean colonoscopy 3 years before finally being diagnosed - my Crohn's is in my small bowel which isn't visible in a scope. If you are having fevers, bleeding, or wave-like stomach cramps GET A SECOND OPINION... If I had, I may not have ended up in surgery. Doctors really are just as fallible as the rest of us. Good luck!
Well thats great news that it came back normal. It didn't show anything at all? Mine showed inflammation and I had swelling but other than that nothing. I got diagnosed with crohns. I don't have bleeding,dirrehea or naseua like alot of people. But I had/have cramps/bloating and had problems with fissures. Maybe you have food allergies. Hope you figure it out.
food intolerance or allergy is def a possibility i carried a multiple food allergy dx for years until recently when i was dx with crohns. ultimately i think that the allergies were really intolerances due to the crohns but many people experience improvements from gi sx with a gluten free diet. the food supply is so jacked that anything could be triggering your sx, i always say if it hurts stop doing it. go gluten free and if you feel better and it doesn't hurt then stick with it! its tough but elimination in order to identify your triggers whether they be from a disease like crohns or simply because you can't tolerate certain foods doesn't matter, if it hurts stay away from it and stick to the elimnation of those foods
Thanks everybody for the advice. My colonoscopy showed swelling, inflammation, and redness, but no signs of disease.
As it stands right now, I am still undiagnosed. In the beginning, 1997 when I was 28, I contracted a protozia in my GI tract- Giardia. The beginning of all my problems. The Giardia was cured but my intestines were permanently scarred. Since then I have had bouts of constipation, diarrhea, vomiting and stomach cramps. They did think I had Celiac Disease, and this is what I was told September, 2010. I had blood work, which came back negative, so then I was told I had Non-Celiac Gluten Intolerance. I bought numerous books, met with a dietitian, and went absolutely 100% gluten free. I felt wonderful for three solid months. Then gradually, the vomiting came back, then the diarrhea, then the cramps. I have lost 19 lbs in the past 2 months. Now the doctors believe I do not actually have a problem with gluten and wheat at all, but I do plan to stay on the GF diet, just because it is a very healthy way to eat.
I have now been told to just try to rest (yeah, right) drink plenty of fluids, take vitamins, and probiotics. I don't have the flu! But still good advice, none the less. The Zofran absolutely sucks- makes me feel worse. Anybody else take that for vomiting?
I am at the end of my rope... is anyone else undiagnosed, afraid, and frustrated?
As it stands right now, I am still undiagnosed. In the beginning, 1997 when I was 28, I contracted a protozia in my GI tract- Giardia. The beginning of all my problems. The Giardia was cured but my intestines were permanently scarred. Since then I have had bouts of constipation, diarrhea, vomiting and stomach cramps. They did think I had Celiac Disease, and this is what I was told September, 2010. I had blood work, which came back negative, so then I was told I had Non-Celiac Gluten Intolerance. I bought numerous books, met with a dietitian, and went absolutely 100% gluten free. I felt wonderful for three solid months. Then gradually, the vomiting came back, then the diarrhea, then the cramps. I have lost 19 lbs in the past 2 months. Now the doctors believe I do not actually have a problem with gluten and wheat at all, but I do plan to stay on the GF diet, just because it is a very healthy way to eat.
I have now been told to just try to rest (yeah, right) drink plenty of fluids, take vitamins, and probiotics. I don't have the flu! But still good advice, none the less. The Zofran absolutely sucks- makes me feel worse. Anybody else take that for vomiting?
I am at the end of my rope... is anyone else undiagnosed, afraid, and frustrated?
Hello again Shan,
I too have had a clear colonoscopy, my colon was really healthy, but I know in myself that I'm far from healthy! I've just had a barium x-ray to look at my small bowel as that's where the docs believe the problem is, it's now another waiting game until I get the results back!
Have your consultants discussed further testing with you at all? A lot of your symtoms are similar to mine (diarrheoa, nautiousness, swollen tender belly, sharp abdo pain, dull ache abdo pain etc etc etc, lol) Personally I wouldn't just accept the rest and recuperation route. Yes its sound advice but as you said your condition doesn't sound like a staight cut case of flu!
I'm sure you already have, but be certain that your doctors understand how much you're suffering, don't let them belittle the way your feeling or disregard it, and push for further testing until they can give you an answer.
I hope you get some real results soon, and be sure that you're not alone in this! I don't come on here daily but do visit regularly if you want to talk any further, just hit me up!
Take care of yourself, and speak soon,
Craig
I too have had a clear colonoscopy, my colon was really healthy, but I know in myself that I'm far from healthy! I've just had a barium x-ray to look at my small bowel as that's where the docs believe the problem is, it's now another waiting game until I get the results back!
Have your consultants discussed further testing with you at all? A lot of your symtoms are similar to mine (diarrheoa, nautiousness, swollen tender belly, sharp abdo pain, dull ache abdo pain etc etc etc, lol) Personally I wouldn't just accept the rest and recuperation route. Yes its sound advice but as you said your condition doesn't sound like a staight cut case of flu!
I'm sure you already have, but be certain that your doctors understand how much you're suffering, don't let them belittle the way your feeling or disregard it, and push for further testing until they can give you an answer.
I hope you get some real results soon, and be sure that you're not alone in this! I don't come on here daily but do visit regularly if you want to talk any further, just hit me up!
Take care of yourself, and speak soon,
Craig
ameslouise
Moderator
Hi Shan -Sorry you are feeling so poor without a DX! If you haven't already found our undiagnosed club, it's over in the General IBD section.
Are there any plans for futher tests to see if you can get a dx?
good luck - hope you get some answers soon - Amy
Are there any plans for futher tests to see if you can get a dx?
good luck - hope you get some answers soon - Amy
Still Sick and Tired
Hey guys,
Still no diagnosis. Still sick. Still REALLY tired. And still frustrated. I have an appointment with the GI doctor on 6/30/11. I think I am going to push for an upper endoscopy or an upper GI. At this point, I am eating Phenergan like it's candy- and still I vomit- every single morning!!!
Hey guys,
Still no diagnosis. Still sick. Still REALLY tired. And still frustrated. I have an appointment with the GI doctor on 6/30/11. I think I am going to push for an upper endoscopy or an upper GI. At this point, I am eating Phenergan like it's candy- and still I vomit- every single morning!!!
Thanks so much for the support. It's so nice to be able to talk to people who understand my pain and don't just look at me like I am a freak or a hypochrondriac. Some people don't know how fortunate they are to not be sick all the time! :stinks:
And I thought you were just trying to get my attention...:mario2:
I was really surprised my name was available..
I was really surprised my name was available..
So you're SickNTired too? Isn't life great? What is your diagnosis?
Cat-a-Tonic
Super Moderator
Hi Shan and sorry I didn't see this thread sooner. As Amy said, we've got an Undiagnosed Club thread (it's actually in the Support section, not the General IBD section). Feel free to post in there if you'd like, there's actually quite a few of us on here who are still undiagnosed and struggling with illness.
I'm undiagnosed myself and have been fighting to get a diagnosis for going on 2 years now. I understand how frustrating and exhausting it can be to have test after test and be told that everything looks normal when obviously you know that's not the case! I've had most of the tests that are available and am still not fully diagnosed. It's absolutely exhausting to have to deal with this illness AND to have to fight on your own behalf against doctors (who are sometimes arrogant or idiots) to even get taken seriously. I feel for you, and I really hope you're able to get a diagnosis soon.
Sorry to hear that the Zofran and Phenergan didn't do much. Have you tried anything else besides those two? There are other anti-nausea meds, Compazine comes to mind (although I personally wouldn't recommend that one as I had an awful reaction to it and felt like I couldn't breathe!). Sometimes natural stuff can help too - for instance, ginger can be wonderful for its anti-nausea properties. I drink ginger tea and take ginger capsules.
Good luck with whatever's next for you - an upper endoscopy sounds like a good place to start. Especially if you're having so much nausea, that could mean that your illness is higher up in your digestive tract. And as someone else mentioned, the colonoscopy only sees the colon and sometimes it also sees the very end of the small intestine. If you have Crohn's, it can manifest anywhere from mouth to anus and frequently appears in the small intestine. You might need something like a CT scan, MRI, small bowel follow-through, or even pill cam to visualise your small intestine and see what's going on in there. Anyway, I'm rambling, but just wanted to say hi and let you know that you're definitely not alone!
I'm undiagnosed myself and have been fighting to get a diagnosis for going on 2 years now. I understand how frustrating and exhausting it can be to have test after test and be told that everything looks normal when obviously you know that's not the case! I've had most of the tests that are available and am still not fully diagnosed. It's absolutely exhausting to have to deal with this illness AND to have to fight on your own behalf against doctors (who are sometimes arrogant or idiots) to even get taken seriously. I feel for you, and I really hope you're able to get a diagnosis soon.
Sorry to hear that the Zofran and Phenergan didn't do much. Have you tried anything else besides those two? There are other anti-nausea meds, Compazine comes to mind (although I personally wouldn't recommend that one as I had an awful reaction to it and felt like I couldn't breathe!). Sometimes natural stuff can help too - for instance, ginger can be wonderful for its anti-nausea properties. I drink ginger tea and take ginger capsules.
Good luck with whatever's next for you - an upper endoscopy sounds like a good place to start. Especially if you're having so much nausea, that could mean that your illness is higher up in your digestive tract. And as someone else mentioned, the colonoscopy only sees the colon and sometimes it also sees the very end of the small intestine. If you have Crohn's, it can manifest anywhere from mouth to anus and frequently appears in the small intestine. You might need something like a CT scan, MRI, small bowel follow-through, or even pill cam to visualise your small intestine and see what's going on in there. Anyway, I'm rambling, but just wanted to say hi and let you know that you're definitely not alone!