- Joined
- Sep 7, 2014
- Messages
- 6
So, I need some general input. I do not know what is going on, but I have something and it will not go away.
I have had various digestive concerns, and other Crohn's issues over the years, but never assumed they were. About three years ago I have a colonoscopy that found three polyps in my cecum, at least one was a tubular adenoma over 1cm in size. I was also told I might have gastroparesis, as I would get sulfur burps and gas periodically.
Earlier this year, Jan/Feb, I started a downward spiral. I took off work Feb 1st and have been going back and forth from work an a leave of absence since. I have had Diarrhea, rash that shows up on my anus and cheeks and mouth/lips/around lips., constipation, rarely bloody diarrhea, severe painful cramps and sharp pains, and more.
I felt batter after eating foods that normally used to make me feel bad, like burritos, but things like salads made me feel worse.
I had a stool sample done, and nothing. Blood work done, and nothing aside from being low iron and partially anemic. I lost about 40-50 pounds and then stabilized over a couple months. There was very little consistency with anything. I would defecate on myself, wake up in the middle of the night to go to the bathroom.
No food allergies found, no parasites, HIDA scan and Ultrasound showed fatty liver but no real issues with liver or gallbladder, and CT scan showed no issues with pancreas. Colonoscopy and endoscopy shows some gastritis and lesions in my stomach but doctor chalked them up to being from digesting ibuprofen. The colon biopsies showed no h pylori or other agents as work.
Many medications did nothing. Strangely, the only digestive issue I did not have was heartburn. Even foods that were almost guaranteed to give me heartburn did not anymore.
Many tests found absolutely nothing aside from temporary anemia, rapid weight loss that stopped, and symptoms of diarrhea and pain.
One digestive health clinic chalked me up to IBS and sen me some pamphlets. However, food was not the issue. I HAD to eat to feel better. If I ate one bite of food I felt sick, if I hate more than that I felt better, but if I ate too much I felt bad again.
The only semi-cure I could find was lomotil. Although, it took forever to find the right way to take it. I had to take two at a specific time of day. Too much of it made the pain increase (like Imodium did). Too few pills and it had almost no impact. So two lomotil, midday and I would be ok. However, it took 24 hours for the lomitil to show impact. So I would take it at midday for it to impact tomorrow. So that I could have a decently formed bowel in the morning before work. On my days off, i would skip the lomotil in order to allow my system to empty itself, otherwise the pain would build.
However, I changed shifts and it started going haywire again. A few nights ago I had bloody diarrhea. It sucks because I have done two stool samples and no blood, and no blood in any other tests, but I get stools that smell so foul of iron and blood. This night, I had a BM in the middle of the night. Then around 250am, I woke up in pain and ran to the bathroom. I leaked bloody diarrhea all over the floor and hopped in the shower and defecated in the shower. I could see red streaks in the stool. My wife, the next morning, found some of the stool on the floor that I missed cleaning up, and she said it had blood in it. The stool definitely had a very strong iron smell and was orange. That morning, my lomotil finally kicked in and I had a formed stool that was dark greenish black.
A day or two later I saw my doctor, and I just asked him to try out the medication for IBD. I have been at the end of my rope. Let's just try something significant and not just lomotil.
So , he put my on prednisone. He gave me many warnings and caution about it, but he prescribed me 50mg of prednisone. That was the last day I took lomotil. I had taken it that evening, I think, and had a formed stool in the morning the next day. Then picked up my prescription for prednisone and took it right away. Very soon I felt a change. I was feeling so much better. Pain going away, nausea going away, everything. I told my wife that it was like I used to have a sore throat where everything hurts, but not the pains I got were just like swallowing a too big bite. No inflammatory pain, but muscular soreness and pain. Yesterday was my second day and today was my third dose. I feel like normal again. I even had heartburn yesterday morning. I ve not taken any lomotil since the day before I started prednisone, but I have not had any diarrhea, very little pain, seemingly no inflammation, and while I had more gas (not much, just a slight bit more) there is no fecal matter coming out with it.
I suspect that I have Crohn's. Of course, that is why i am here.
The prednisone has been a miracle for me, and I feel like myself again. I am able to sleep, feel normal, eat what I want (I have been trying to eat a lot and make myself feel sick again and it just doesn't really happen), I only get a few pings of pain here or there but so are subsiding as I heal, and all my BMs are more or less formed and normal.
I am scared of when my 7th and final pill ends. I don't see the doctor for a few more days after that, and I worry that I will relapse. I still have lomotil to fall back on.
My case for Crohn's is all that, and I have abscesses over the last few years on my stomach and my butt cheeks that bleed and have other matter in them. I also have had inor issues like sulfur burps, rashes of small red and white bumps on my mouth and lips and anus and inside cheeks. One colorectal surgeon called them ulcers. I have crystal in my urine and idiopathic overactive bladder that cannot be explained.
I do not think it is ulcerative colitis since it does not seem limited to my color, but also to my stomach, mouth, and other areas.
My doctor also does not believe the diagnosis of IBS, saying if it was IBS it would be the worst case he has ever seen.
Not to mention, he said that is the prednisone worked, that he would be leaning towards IBD.
The only issue is not making a diagnosis is that everything seems to be based on symptoms alone without definitive evidence in the tests. As far as testing shows, all my organs are all fine. However, here I am with pain and cramps and diarrhea and rash and some light vomiting (a few times over 6 months), and headaches from eating and borderline anemia and oily loose stools and more.
I feel like a kid at Christmas with this prednisone. I would say that 'you have no idea how exciting it is for something to work'...but I know that every single person on this forum probably knows exactly what I mean. It actually gets me excited. Very excited, to think that something is actually working. I feel liek I did before all this started happening, or as close as I ever thought I would be again.The pain comes back in the morning a bit, but within half an hour or so of taking the prednisone it is back to feeling great. Its like the prednisone is a damn holding back all the symptoms.
I was on some diability leave from work, and even though I have symptoms, my work would not pay me any more disbaility pay while I was on a LOA because they could not find the cause or the doctors would not make a diagnosis. So, for the second time, I went back to work. however, i Miss about half my shifts and hours because of diarrhea and pain. I have been told to just let my work fire me, and collect unemployment, but I dont want to. I have a family to support, my wife and two kids, and it is my job to be their provider. So if i can finally understand what is happening, and keep this level of remission, I will be so extremely happy
Any thoughts? is this likely Crohn's due to symptoms and the highly effective impact of prednisone?
I have had various digestive concerns, and other Crohn's issues over the years, but never assumed they were. About three years ago I have a colonoscopy that found three polyps in my cecum, at least one was a tubular adenoma over 1cm in size. I was also told I might have gastroparesis, as I would get sulfur burps and gas periodically.
Earlier this year, Jan/Feb, I started a downward spiral. I took off work Feb 1st and have been going back and forth from work an a leave of absence since. I have had Diarrhea, rash that shows up on my anus and cheeks and mouth/lips/around lips., constipation, rarely bloody diarrhea, severe painful cramps and sharp pains, and more.
I felt batter after eating foods that normally used to make me feel bad, like burritos, but things like salads made me feel worse.
I had a stool sample done, and nothing. Blood work done, and nothing aside from being low iron and partially anemic. I lost about 40-50 pounds and then stabilized over a couple months. There was very little consistency with anything. I would defecate on myself, wake up in the middle of the night to go to the bathroom.
No food allergies found, no parasites, HIDA scan and Ultrasound showed fatty liver but no real issues with liver or gallbladder, and CT scan showed no issues with pancreas. Colonoscopy and endoscopy shows some gastritis and lesions in my stomach but doctor chalked them up to being from digesting ibuprofen. The colon biopsies showed no h pylori or other agents as work.
Many medications did nothing. Strangely, the only digestive issue I did not have was heartburn. Even foods that were almost guaranteed to give me heartburn did not anymore.
Many tests found absolutely nothing aside from temporary anemia, rapid weight loss that stopped, and symptoms of diarrhea and pain.
One digestive health clinic chalked me up to IBS and sen me some pamphlets. However, food was not the issue. I HAD to eat to feel better. If I ate one bite of food I felt sick, if I hate more than that I felt better, but if I ate too much I felt bad again.
The only semi-cure I could find was lomotil. Although, it took forever to find the right way to take it. I had to take two at a specific time of day. Too much of it made the pain increase (like Imodium did). Too few pills and it had almost no impact. So two lomotil, midday and I would be ok. However, it took 24 hours for the lomitil to show impact. So I would take it at midday for it to impact tomorrow. So that I could have a decently formed bowel in the morning before work. On my days off, i would skip the lomotil in order to allow my system to empty itself, otherwise the pain would build.
However, I changed shifts and it started going haywire again. A few nights ago I had bloody diarrhea. It sucks because I have done two stool samples and no blood, and no blood in any other tests, but I get stools that smell so foul of iron and blood. This night, I had a BM in the middle of the night. Then around 250am, I woke up in pain and ran to the bathroom. I leaked bloody diarrhea all over the floor and hopped in the shower and defecated in the shower. I could see red streaks in the stool. My wife, the next morning, found some of the stool on the floor that I missed cleaning up, and she said it had blood in it. The stool definitely had a very strong iron smell and was orange. That morning, my lomotil finally kicked in and I had a formed stool that was dark greenish black.
A day or two later I saw my doctor, and I just asked him to try out the medication for IBD. I have been at the end of my rope. Let's just try something significant and not just lomotil.
So , he put my on prednisone. He gave me many warnings and caution about it, but he prescribed me 50mg of prednisone. That was the last day I took lomotil. I had taken it that evening, I think, and had a formed stool in the morning the next day. Then picked up my prescription for prednisone and took it right away. Very soon I felt a change. I was feeling so much better. Pain going away, nausea going away, everything. I told my wife that it was like I used to have a sore throat where everything hurts, but not the pains I got were just like swallowing a too big bite. No inflammatory pain, but muscular soreness and pain. Yesterday was my second day and today was my third dose. I feel like normal again. I even had heartburn yesterday morning. I ve not taken any lomotil since the day before I started prednisone, but I have not had any diarrhea, very little pain, seemingly no inflammation, and while I had more gas (not much, just a slight bit more) there is no fecal matter coming out with it.
I suspect that I have Crohn's. Of course, that is why i am here.
The prednisone has been a miracle for me, and I feel like myself again. I am able to sleep, feel normal, eat what I want (I have been trying to eat a lot and make myself feel sick again and it just doesn't really happen), I only get a few pings of pain here or there but so are subsiding as I heal, and all my BMs are more or less formed and normal.
I am scared of when my 7th and final pill ends. I don't see the doctor for a few more days after that, and I worry that I will relapse. I still have lomotil to fall back on.
My case for Crohn's is all that, and I have abscesses over the last few years on my stomach and my butt cheeks that bleed and have other matter in them. I also have had inor issues like sulfur burps, rashes of small red and white bumps on my mouth and lips and anus and inside cheeks. One colorectal surgeon called them ulcers. I have crystal in my urine and idiopathic overactive bladder that cannot be explained.
I do not think it is ulcerative colitis since it does not seem limited to my color, but also to my stomach, mouth, and other areas.
My doctor also does not believe the diagnosis of IBS, saying if it was IBS it would be the worst case he has ever seen.
Not to mention, he said that is the prednisone worked, that he would be leaning towards IBD.
The only issue is not making a diagnosis is that everything seems to be based on symptoms alone without definitive evidence in the tests. As far as testing shows, all my organs are all fine. However, here I am with pain and cramps and diarrhea and rash and some light vomiting (a few times over 6 months), and headaches from eating and borderline anemia and oily loose stools and more.
I feel like a kid at Christmas with this prednisone. I would say that 'you have no idea how exciting it is for something to work'...but I know that every single person on this forum probably knows exactly what I mean. It actually gets me excited. Very excited, to think that something is actually working. I feel liek I did before all this started happening, or as close as I ever thought I would be again.The pain comes back in the morning a bit, but within half an hour or so of taking the prednisone it is back to feeling great. Its like the prednisone is a damn holding back all the symptoms.
I was on some diability leave from work, and even though I have symptoms, my work would not pay me any more disbaility pay while I was on a LOA because they could not find the cause or the doctors would not make a diagnosis. So, for the second time, I went back to work. however, i Miss about half my shifts and hours because of diarrhea and pain. I have been told to just let my work fire me, and collect unemployment, but I dont want to. I have a family to support, my wife and two kids, and it is my job to be their provider. So if i can finally understand what is happening, and keep this level of remission, I will be so extremely happy
Any thoughts? is this likely Crohn's due to symptoms and the highly effective impact of prednisone?
