please read my story...
I am somewhat new to this board, but want to share my story. I have not been dx with crohns yet and hope I do not have it, but my history of chronic illness has me worried.
Back in 2003 I got the flu shot and three weeks later is when my life of health was turned upside down. It started with what I thought was a virus. I started getting the beginnings of a cold. Well within hours my throat was on fire! I do not mean the kind of pain you get with a sore throat. I mean it felt like I had a severe burn inside my throat and upper esophagus. It did not hurt when I swallowed, it just was a constant severe burning sensation. I had never felt this type of pain in my life( I've went through labor and almost died with an exploded ectopic pregnancy), this pain was 1000 times worse. I cannot explain it even. Anyhow, I went to the ER and the intern there assesed my symptoms and said " well, you likely have thrush in the esophagus and this only happens in people with AIDS and leukemia so we will have to test you for these things". Ok, my husband and I were now panicking. I knew I did not have AIDS, but I was worried about the leukemia. Turns out I did not have either accoding to their blood work.
So they send me home with diflucan. I am at this point in tears and am in so much pain, my throat and upper esophagus is on fire. Fast foward, I finally after a week end up getting sent to an ENT doc. He says my blood works shows I have a slight thyroiditis( nothing big), but he still cannot say what this severe throat burning is. He sticks this long mirror down my throat and says' WOW,you are inflammed!". He puts me immediately on steriods and antibitoics as I have also developed a severe cough and am coughing up green stuff( had a chest xray and it was clear). I stayed on the prednisone for 5 days and had to get off as they were causing my heart rate to drop too much. The prednisone helped take the burning down some, but did not take it away. Well I had this burning that was unbearable for about two years! I went to sooo many doctors and had all sorts of tests ( many upper endoscopies, small bowel follow through, esophagram, acid reflux tests etc.). I then went to the MAYO clinic. I also at this time was having upper gut issues where when I would eat I would feel so bloated and stuffed after eating only a tiny amount of food. Well at the mayo clinic they did several tests. They did the acid test where they attach a sensor to your esophagus and it records if there is any acid reflux. Then the capsule will pass on it's own after it falls off from the esophagus. They also did two upper enoscopies and said that when they did the first one, they said when they took the biopsy, the skin kind of sloughed off in a sheet which is abnormal. They then went in and did another scope and took several biopsies on the upper esophagus and checked for different bolous skin diseases like pemphigus, and lichen planus. They came back negative. So the mayo sent me home telling me they were sure I had some sort of autoimmune disease but did not know what it was.( what a waste of F'n money!!! $10,000 down the drain and no answers!) They told me to follow up here in Chicago with a dermatologist in hopes that they will eventaully find a reason. Well I went to several doctors and was dx with so many things( lyme disease, undifferenciated connective tissue disease, you name it), every doc had their own theory. In reality, they were clueless!!
Well I came back here to Chicago and seen several Gastro docs, dermatologists, ENT docs, nobody knew why I was having this severe burning in my throat and upper gut issues. I had so many upper scopes and they never showed anything. I mean it was like that severe inflammation went away, but the severe burning stayed. I finally found a gastro doc who I was working with and started taking domperidone for the upper gut issues. This gastro did a small bowel manometry test and dx me with a neuropathic dysmotility of the small bowel. The domperidone helped me alot. Well after being on it for a couple years, I started having bladder issues with pain and frequency. Well fast foward, I was then dx with having Interstitial cysttitis. Now I thought nothing could be as painful as the throat burning, OH boy was that assumption wrong. I cannot even begin to tell you the pain I was in. I did all the treatment for IC and nothing worked. I cannot tell you how many times I drove by the train tracks and thought about getting out and just stepping infront. No I was not out of my mind depressed and Yes I was in my right and able mind. I was just so tired of living in uncomprehensible pain that was relentless with no relief. You would have to have IC to understand what I am talking about.I tried all kinds of meds to no avail. I also did bladder infusions and ended up with constant bladder infections due to the catheter. I had one infection that would not go away for over 6 months. I wanted to die I was in so much pain. I finally went to the locel urgent care here and this nice lady doctor put me on an antibiotic and said I would have to be on it for at least a month. I have been on it low dose now for three years to help keep the infection away.
Anyhow, during all this time I have had elevated sed-rate all the time and elevated C-reactive protein tests on and off. I then developed severe muscle pains( dx with fibromyalgia). I also developed a grade 1 heart murmur. I have a rash on my wrists that wont go away( likely a side effect from the low dose keflex I am on to prevent the severe UTI's I get). I also have a itchy rash under my ****s.
Last year my husband brought home the stomach flu( he is a teacher). Well ever since then my lower intestines have been messed up on and off. Well for the last month I have gotten way worse! My symptoms are constant pain all throughout my intestines with crampiness, soreness, tenderness and just icky feeling. my gastro says likely IBS. I do not have the typical diarhea or constipation that comes with IBS though. I hd one episode of diarhea( not watery) just like mush with some formed mixed with it. But other than that I usually go once a day to every day and half to two days. The stools are usually formed but more soft. I have pain and cramping all throughout my intestines and feel Worse after I have a BM. I get this icky feeling inside like soreness and tenderness and some slight nausea. I have to sit with the heating pad alot of the time. I have no blood in my stools, but did have some white mucus in a few of them. I often feel like I have to poop, but do not actually go. I have alot of gas and belching too. My cramping is worse after I eat. I also feel very bloated.
Now my GI doc and regular doc says IBS. But everywhere I read, IBS says you have to have one or more diareha stools a day or hard stools every three days or alternating. I do not fit into that catagory. My GI doc says that IBS is different for everyone. I have not had any tests to rule out anything esle recently. I mean I have had a butt load of tests to last a life time, but none recently in the past year since this new issues started. I did have a ton of blood work and stool cultures which were normal though. I am going to see the GI doc Wednesday to discuss this. I am sure he will want to investigate. I am scared of the colonoscopy. The reason is because you have to induce diarhea to clean out the intestines. Well whenever I get any type of Diarhea, I get UTI's. Last year when I had the stomach flu I had bad diareha and even with how careful and clean I was( took a shower after each BM) I still got a UTI. See it is complicted. I cannot just take an antibitoic. I am allergic and more so have severe adverse reactions to most all the antibitoics that they treat UTI's with so I am not at the luxury of being able to treat the UTI's. So this is naturally a valid concern for me.
With looking at all my symptoms over the last few years, do you think it sounds like crohns all along. I mean with the whole esophagus burning thing( they say crohns can go anywhere in the GI tract including the esophagus), I know they did biopsies, but maybe they would have had to check for that specifically. Or would the crohns have been visible when they did all those scopes? I am not sure what crohns in the esophagus would look like. I would be so F'n pissed if I found out I have had crohns all this time and been to like a ton of different doctors Alot of them supposed the top GI docs and no one of them could figure this out!! Maybe I am jumping the gun here, but looking at all my symptoms makes me worry that maybe I do have it. Maybe I am worrying to much, I dont know.
Lastly,are there are less invasive tests that can dx crohns or rule it out? I know colonoscopy is the standard, but I as I said I am concerned about the whole UTI thing from the diareha. I will obviously see what my gastro doc says, but just wanted to share my story..... Sorry if I was long-winded here.
I am somewhat new to this board, but want to share my story. I have not been dx with crohns yet and hope I do not have it, but my history of chronic illness has me worried.
Back in 2003 I got the flu shot and three weeks later is when my life of health was turned upside down. It started with what I thought was a virus. I started getting the beginnings of a cold. Well within hours my throat was on fire! I do not mean the kind of pain you get with a sore throat. I mean it felt like I had a severe burn inside my throat and upper esophagus. It did not hurt when I swallowed, it just was a constant severe burning sensation. I had never felt this type of pain in my life( I've went through labor and almost died with an exploded ectopic pregnancy), this pain was 1000 times worse. I cannot explain it even. Anyhow, I went to the ER and the intern there assesed my symptoms and said " well, you likely have thrush in the esophagus and this only happens in people with AIDS and leukemia so we will have to test you for these things". Ok, my husband and I were now panicking. I knew I did not have AIDS, but I was worried about the leukemia. Turns out I did not have either accoding to their blood work.
So they send me home with diflucan. I am at this point in tears and am in so much pain, my throat and upper esophagus is on fire. Fast foward, I finally after a week end up getting sent to an ENT doc. He says my blood works shows I have a slight thyroiditis( nothing big), but he still cannot say what this severe throat burning is. He sticks this long mirror down my throat and says' WOW,you are inflammed!". He puts me immediately on steriods and antibitoics as I have also developed a severe cough and am coughing up green stuff( had a chest xray and it was clear). I stayed on the prednisone for 5 days and had to get off as they were causing my heart rate to drop too much. The prednisone helped take the burning down some, but did not take it away. Well I had this burning that was unbearable for about two years! I went to sooo many doctors and had all sorts of tests ( many upper endoscopies, small bowel follow through, esophagram, acid reflux tests etc.). I then went to the MAYO clinic. I also at this time was having upper gut issues where when I would eat I would feel so bloated and stuffed after eating only a tiny amount of food. Well at the mayo clinic they did several tests. They did the acid test where they attach a sensor to your esophagus and it records if there is any acid reflux. Then the capsule will pass on it's own after it falls off from the esophagus. They also did two upper enoscopies and said that when they did the first one, they said when they took the biopsy, the skin kind of sloughed off in a sheet which is abnormal. They then went in and did another scope and took several biopsies on the upper esophagus and checked for different bolous skin diseases like pemphigus, and lichen planus. They came back negative. So the mayo sent me home telling me they were sure I had some sort of autoimmune disease but did not know what it was.( what a waste of F'n money!!! $10,000 down the drain and no answers!) They told me to follow up here in Chicago with a dermatologist in hopes that they will eventaully find a reason. Well I went to several doctors and was dx with so many things( lyme disease, undifferenciated connective tissue disease, you name it), every doc had their own theory. In reality, they were clueless!!
Well I came back here to Chicago and seen several Gastro docs, dermatologists, ENT docs, nobody knew why I was having this severe burning in my throat and upper gut issues. I had so many upper scopes and they never showed anything. I mean it was like that severe inflammation went away, but the severe burning stayed. I finally found a gastro doc who I was working with and started taking domperidone for the upper gut issues. This gastro did a small bowel manometry test and dx me with a neuropathic dysmotility of the small bowel. The domperidone helped me alot. Well after being on it for a couple years, I started having bladder issues with pain and frequency. Well fast foward, I was then dx with having Interstitial cysttitis. Now I thought nothing could be as painful as the throat burning, OH boy was that assumption wrong. I cannot even begin to tell you the pain I was in. I did all the treatment for IC and nothing worked. I cannot tell you how many times I drove by the train tracks and thought about getting out and just stepping infront. No I was not out of my mind depressed and Yes I was in my right and able mind. I was just so tired of living in uncomprehensible pain that was relentless with no relief. You would have to have IC to understand what I am talking about.I tried all kinds of meds to no avail. I also did bladder infusions and ended up with constant bladder infections due to the catheter. I had one infection that would not go away for over 6 months. I wanted to die I was in so much pain. I finally went to the locel urgent care here and this nice lady doctor put me on an antibiotic and said I would have to be on it for at least a month. I have been on it low dose now for three years to help keep the infection away.
Anyhow, during all this time I have had elevated sed-rate all the time and elevated C-reactive protein tests on and off. I then developed severe muscle pains( dx with fibromyalgia). I also developed a grade 1 heart murmur. I have a rash on my wrists that wont go away( likely a side effect from the low dose keflex I am on to prevent the severe UTI's I get). I also have a itchy rash under my ****s.
Last year my husband brought home the stomach flu( he is a teacher). Well ever since then my lower intestines have been messed up on and off. Well for the last month I have gotten way worse! My symptoms are constant pain all throughout my intestines with crampiness, soreness, tenderness and just icky feeling. my gastro says likely IBS. I do not have the typical diarhea or constipation that comes with IBS though. I hd one episode of diarhea( not watery) just like mush with some formed mixed with it. But other than that I usually go once a day to every day and half to two days. The stools are usually formed but more soft. I have pain and cramping all throughout my intestines and feel Worse after I have a BM. I get this icky feeling inside like soreness and tenderness and some slight nausea. I have to sit with the heating pad alot of the time. I have no blood in my stools, but did have some white mucus in a few of them. I often feel like I have to poop, but do not actually go. I have alot of gas and belching too. My cramping is worse after I eat. I also feel very bloated.
Now my GI doc and regular doc says IBS. But everywhere I read, IBS says you have to have one or more diareha stools a day or hard stools every three days or alternating. I do not fit into that catagory. My GI doc says that IBS is different for everyone. I have not had any tests to rule out anything esle recently. I mean I have had a butt load of tests to last a life time, but none recently in the past year since this new issues started. I did have a ton of blood work and stool cultures which were normal though. I am going to see the GI doc Wednesday to discuss this. I am sure he will want to investigate. I am scared of the colonoscopy. The reason is because you have to induce diarhea to clean out the intestines. Well whenever I get any type of Diarhea, I get UTI's. Last year when I had the stomach flu I had bad diareha and even with how careful and clean I was( took a shower after each BM) I still got a UTI. See it is complicted. I cannot just take an antibitoic. I am allergic and more so have severe adverse reactions to most all the antibitoics that they treat UTI's with so I am not at the luxury of being able to treat the UTI's. So this is naturally a valid concern for me.
With looking at all my symptoms over the last few years, do you think it sounds like crohns all along. I mean with the whole esophagus burning thing( they say crohns can go anywhere in the GI tract including the esophagus), I know they did biopsies, but maybe they would have had to check for that specifically. Or would the crohns have been visible when they did all those scopes? I am not sure what crohns in the esophagus would look like. I would be so F'n pissed if I found out I have had crohns all this time and been to like a ton of different doctors Alot of them supposed the top GI docs and no one of them could figure this out!! Maybe I am jumping the gun here, but looking at all my symptoms makes me worry that maybe I do have it. Maybe I am worrying to much, I dont know.
Lastly,are there are less invasive tests that can dx crohns or rule it out? I know colonoscopy is the standard, but I as I said I am concerned about the whole UTI thing from the diareha. I will obviously see what my gastro doc says, but just wanted to share my story..... Sorry if I was long-winded here.
*hugs* to you.
