I have crohns it was in my large intestine, I have been very ill lately vomiting diarrhea, pain, fatigue, they did a colonoscopy and all is normalin the large intestine & colon, but I have all the symptoms, Crohns can I have been told be in from your mouth to your other end, I believe mine has moved is this possible, as isn't crohns incurable?? I am at my wits end, I cannot socialise sick, can't work alot sick, can't make any plans as don;t know how I will feel on the day, my marriage has tension as I am always sick, Is there anybody else going through a similar story, I feel so alone!!!!, I have great family & friends, but I feel i am a burden :-(
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Want to know if others feel as I do
- Thread starter Lilibit2
- Start date
Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum, I am sorry you are not doing well at the moment 
Are you on any medications at the moment? When the colonoscopy was done were any biopsies done and have the results come through from these as well showing everything is clear? One thing about a colonscopy is that it can't look much at the small intestine so it could be that the problem is further 'up the line', perhaps further testing is required. What has your GI said about this?
I do hope the problem can be found soon so you can get the treatment required to feel better. It is really you have joined us - you are certainly not alone here :hug:
Are you on any medications at the moment? When the colonoscopy was done were any biopsies done and have the results come through from these as well showing everything is clear? One thing about a colonscopy is that it can't look much at the small intestine so it could be that the problem is further 'up the line', perhaps further testing is required. What has your GI said about this?I do hope the problem can be found soon so you can get the treatment required to feel better. It is really you have joined us - you are certainly not alone here :hug:
David
Co-Founder
- Location
- Naples, Florida
Hi there and welcome. You're not alone! And you are NOT A BURDEN. This is not your fault.
I agree with Angrybird that maybe some additional testing needs to be done. CT Scan, Endoscopy, Pill cam, small bowel follow through all come to mind. And with that fatigue, I'd ask them to check your vitamin B12 levels as well.
And no, Crohn's Disease is not curable but can be well managed. Do they have you on any medications?
I agree with Angrybird that maybe some additional testing needs to be done. CT Scan, Endoscopy, Pill cam, small bowel follow through all come to mind. And with that fatigue, I'd ask them to check your vitamin B12 levels as well.
And no, Crohn's Disease is not curable but can be well managed. Do they have you on any medications?
Thank you
Thank you for the quick reply, no they did not do a biopsy, they tried to remove a polp but kept loosing it, I believe that it has moved as when I had my very first colonscopy they did not find crohns, on the second they found it at the very top of my large intestine, so I am thinking that it has moved, Is it true crohns can be in your mouth as well, as I suffer alot with ulcers in my mouth, also I am always hot to the point where it feels like I have a fever is this part of crohns, I am on Azathioprine 250mg a day, Pentasa, Codeine, I have also been on Predinsone twice, I don't understand why with all the medications I still have nausea, diarrhea, pain, I have so many questions, which I should ask my Specialist but he always seems in such a hurry & I am not that person who will ask alot of questions in person, to be fair to my specialist he is very good, just very very busy, I had a endoscopy 8 years ago, so I think I need to have another as I really think it has moved up there somewhere, Thank you for reading & listening, I have felt so alone, and thank you angrybird for taking the time as well, Very much appreciated, Lilibit2:thumleft:
Thank you for the quick reply, no they did not do a biopsy, they tried to remove a polp but kept loosing it, I believe that it has moved as when I had my very first colonscopy they did not find crohns, on the second they found it at the very top of my large intestine, so I am thinking that it has moved, Is it true crohns can be in your mouth as well, as I suffer alot with ulcers in my mouth, also I am always hot to the point where it feels like I have a fever is this part of crohns, I am on Azathioprine 250mg a day, Pentasa, Codeine, I have also been on Predinsone twice, I don't understand why with all the medications I still have nausea, diarrhea, pain, I have so many questions, which I should ask my Specialist but he always seems in such a hurry & I am not that person who will ask alot of questions in person, to be fair to my specialist he is very good, just very very busy, I had a endoscopy 8 years ago, so I think I need to have another as I really think it has moved up there somewhere, Thank you for reading & listening, I have felt so alone, and thank you angrybird for taking the time as well, Very much appreciated, Lilibit2:thumleft:
Hi Lilibit2
Welcome to the Forums.. I sometimes feel that I am a burden to my friends and family too, too tired to socialise, grumpy with my fiance, can't go out for meals in case i eat something that doesn't agree with me... all the usual stuff.
BUT! There is hope, you have signed onto the most helpful, reassuring and lovely forum I have come across. Everyone is helpful and a problem shared is a problem (almost) solved.
If you ever need to talk, we are all the the same boat and there is plenty of information and support available!
Take care and keep us updated
Sam x
Welcome to the Forums.. I sometimes feel that I am a burden to my friends and family too, too tired to socialise, grumpy with my fiance, can't go out for meals in case i eat something that doesn't agree with me... all the usual stuff.
BUT! There is hope, you have signed onto the most helpful, reassuring and lovely forum I have come across. Everyone is helpful and a problem shared is a problem (almost) solved.
If you ever need to talk, we are all the the same boat and there is plenty of information and support available!
Take care and keep us updated
Sam x
Lilibit2, you know, you may just have to write down the questions you have and take them with you. I find that helpful, as even if I have them all in my mind when I go, when we get to discussing one, those discussions can veer off and make me forget the other questions. And just MAKE him slow down long enough to listen and answer you. You deserve that, and in truth, the doctors would rather someone take it seriously and want to understand. You will feel better, I am sure of it, it just takes awhile sometimes. We are here!
I am so sorry you aren't feeling well. This is not your fault and you are not a burden!
I agree with CLynn. I've had a few appts since diagnosis and at each appt, I had questions in my head that I wanted to ask and once I got in the car I realized I had missed a few. For my last appt I wrote down EVERY SINGLE question and brought it was me. My doctor answered them with no problem! It's very easy to get distracted at an appt so I would highly recommend writing down your questions as you think of them and if your dr won't listen to you, I would try to find a new GI.
Good luck.
I agree with CLynn. I've had a few appts since diagnosis and at each appt, I had questions in my head that I wanted to ask and once I got in the car I realized I had missed a few. For my last appt I wrote down EVERY SINGLE question and brought it was me. My doctor answered them with no problem! It's very easy to get distracted at an appt so I would highly recommend writing down your questions as you think of them and if your dr won't listen to you, I would try to find a new GI.
Good luck.
Advice amazing
Thank you i read these today & felt happier than I have in a long time, people who understand, People try but just don't understand what its like to have crohns run your life, I hve taken all the advice on board, I have app at hospital on the 28th, will post when I have been thanks again, I wish I had found this site years ago :hug:
Thank you i read these today & felt happier than I have in a long time, people who understand, People try but just don't understand what its like to have crohns run your life, I hve taken all the advice on board, I have app at hospital on the 28th, will post when I have been thanks again, I wish I had found this site years ago :hug:
Hi Lilibit2,
You are not alone. I was fortunate enough to be able to spend today with some of my family. Although at times I simply had to sit (or lay) there with eyes closed, sweat dripping, waiting for the pain to pass. I can attest to having been rather 'impatient' recently. Steroids don't help with that either. My lovely wife (who is about to have our first - and only - child; a girl!) has been understanding, but I can certainly relate to tension at times. We are both going through a lot, obviously. (Diagnosed in Aug of last year - maybe i"ll share my/our story sometime).
You said it yourself, you have 'great' family and friends. You're not a burden to them. They don't think you are either.
I'll be praying for you. Let us know how it goes.
Ray
You are not alone. I was fortunate enough to be able to spend today with some of my family. Although at times I simply had to sit (or lay) there with eyes closed, sweat dripping, waiting for the pain to pass. I can attest to having been rather 'impatient' recently. Steroids don't help with that either.
My lovely wife (who is about to have our first - and only - child; a girl!) has been understanding, but I can certainly relate to tension at times. We are both going through a lot, obviously. (Diagnosed in Aug of last year - maybe i"ll share my/our story sometime).You said it yourself, you have 'great' family and friends. You're not a burden to them. They don't think you are either.
I'll be praying for you. Let us know how it goes.
Ray