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New Member with Jejunoileitis Crohns

Hi, I am new here and have been reading the forum on and off. I am a 36 YR male and was diagnosed with crohns about a year ago after months of misdiagnosis and being told it was all in my head by more than a few doctors. It started as a burning sensation in the early morning and felt like I was really hungry or had had too much coffee. I ignored it for a while thinking it was just the junk food I had ate the night before. I got worse pretty quickly, the pain turned from a burning sensation to a stabbing acute abdominal pain with vomiting. After a few times having that happen, I finally went to the ER. Then came misdiagnosis #1, gastritis. They pumped me with steroids and everything was fine for a few weeks, then the same thing happened again, back to the same ER. This time I actually got to see the hospitals GI doctor, his first question was..."why do you have this crappy insurance?'...nice huh. So after commenting on my crappy insurance plan he basically ordered a colonoscopy and I heard him say..."well if he tolerates the prep (drinking lots of nasty fluid that makes you defecate) than the problem can't be that bad. So drink the nasty sh!t I did, I had a colonostapy and it yielded no real results. I had a small anal fistula a few months before all this started happening and when I was there the doctor who removed/closed it asked me if I had Crohn's disease, I said no, but this was in my medical file and you would think these other ER doctors would have taken the possibility of Crohn's more seriously. So this second trip to the ER and week long stay and battery of tests yielded only inconclusive results. Fast forward a few more months and I started loosing weight as eating like I was used to (big meals in frequently and late at night) was taking its toll, so I just stopped eating until I couldn't bear the hunger. After I had dropped about 60 pounds, my PC was really concerned. I told him that my current GI had run every test in the book and was telling me that he still didn't think I had Crohns. Then I became really sick and was talking with a friend of mine who was a head nurse at Merriam Hospital in Providence RI. He said..."come to my place, we have a full time GI staff. So I drove myself there, puking out the window at just about every stop light for 20 miles, good thing it was late at night or I probably would have been stopped. Sounds crazy, but with two babies and a sleep deprived mom all ready stressed out, I would rather take a dog sled team there alone in July while bleeding from my eyes, than ask her to put the kids in the car at 3 AM and drive me there. Of course she would, but I just can't do that to her. Oh and ambulances here will only take me to the crappy hospital I had already been to twice, so if your asking, that's why I drive myself, slowly and carefully. So I arrive at the new hospital and am treated with a little apprehension, from the staff as again, I look pretty good, but was in excruciating pain. So an MRI pretty quickly showed a bowl obstruction. They medicated me up and monitored me overnight. The obstruction started to pass on its own, so within a few days I was sent home. Still with no diagnosis. About a month went by and again I awoke in agony, nauseous, sweaty and feeling like the guy in Alien when it bursts through his stomach. So again I drive myself to the ER 20 miles away. Same initial treatments showed another bowel obstruction in the same area. The head of surgery came and talked to me. He was/is a really nice guy and he said..."look you have had every test in the book, I think we need to go in there and see whats happening". Although I was frightened by the idea of someone cutting into my intestines, I was desperate for relief, so I agreed to the surgery. Post surgery the doctor said that their was some minor scar tissue and inflammation, but from what he saw it didn't look that bad. I was kinda shocked, with all the pain I was experiencing, I assumed they would find lots of..something in there. After the surgery and leaving the hospital, I was on no meds, no Humira, no biologics, no roids. The biopsy from the intestines they removed, which was only about 3 inches, came back as "highly suspicious of Crohn's". So after the 4-5 week recovery, I felt better, not cured, but better. I was still being very careful with my diet and hoping things would continue to get better. A few months after the surgery the symptoms started to return, slowly at first. They were a little different with regards to intensity and location, but still more or less the same stuff. So I asked my PC for a referral for a new GI Dr. When I went to visit with him (new GI)for the first time, he said..."I noticed you are coming to me after already having a GI Dr. Why do you want to leave him?" I said.."because he is not listening to me for one, I tell him how I feel and he basically tells me I am wrong, or just perhaps more sensitive to digestion sensations than the average person, which is a polite way of telling me its all in my head and I can't keep going to a doctor who doesn't believe what I am telling him." The new GI doctor replied..."well, don't be too mad at him, Crohns is an insidious disease that hides and re-appears. People can have terribly ulcerated GI tracts and experience little to no pain for years, while others like you have only mild visible damage, but high levels of pain. If I wasn't looking at the results of your biopsy and MRi's I wouldn't think you have Crohns either, your symptoms just are not very typical of someone with Crohn's. So I started on oral timed anti-inflammatory pills (Pentasa) it didn't help at all. Then a round of good old Prednesone, and for a few weeks I felt like my old self again! I was stoked, I was able to have a few, ok more than a few beers one night and eat like I used to for the first time in a long time I thought maybe I could live with this. Of course, you can't stay on the roids forever and after a few weeks of being off of them, my symptoms started to return. So my GI guy said, well lets try some Humira, its miracle stuff and seems to help most people who I prescribe it to. So after being on Humira for almost a year, I don't even know if its really working. My GI guy seems to think it at least keeping my Crohn's from getting worse, but over the past 5-6 months my symptoms have been worsening. Lots of pain...daily especially after I try to eat. I can't sleep very long before a wave of cramps wakes me up and am only getting 3-4 hours of "quality" sleep a night. At any given time when I am having a "cramp spasm" as I have come to call them, you can see and feel a hard muscle like bulge push outwards from my lower belly. Its huge, like a fist or a babies arm and visible even through my clothes. I have started having to pee all the time because my gut is putting so much pressure on my bladder. Then their is the noises, you can hear it from 15 feet away in a quiet room. Sometimes it happens while I am talking to clients and they are like..."OMG, are you ok?" I am always comical about it and say something like..."don't listen to him, he is just angry right now.", but they look at me like...wtf is wrong with this guy. Seriously its that loud.

So here I am, a year after my "Diagnosis", with one re-sectioning under my belt and on the "Mirracle drugs" and my GI is telling me that its time for another surgery and there is nothing more he can do. Of course now that I know exactly what that entails, I am hesitant. Especially since I have already had one and it didn't really do much other than keep me out of work for 3 weeks. That said, I can't live this way much longer. My life is exhausting, I have two small children one of which has a very light touch of Autism. I work for myself and own a small plumbing and heating company which means I work an easy 50-70 hours a week. I am up every day at 5:30 Am, which is easy now because I am usually in pain by then and not sleeping anyways. I get the kids up and get them to school so my wife can get some sleep so she can deal with them the rest of the day. I try to eat right while at work, but more frequently I am just not eating and have become weak and just a shell of the 240 muscle bound man I was. After a 10 or 12 hour work day I come home, exhausted and do my best to help with the kids and the house, but I am short on patience and energy as I am almost always in some degree of abdominal pain especially at night and its affecting all my relationships. I am struggling to maintain my life and I can't maintain this very much longer. One thing that has helped me is Marijuana, luckily I live in a medical pot state and it seems to be just enough to take the edge off. It doesn't make the pain go away, but it does "turn the volume down" enough so that I don't feel like I am gona die. It certainly helps with the spasms. I have told my GI that I am self medicating with pot and he is ok with it, but had nothing to offer as to why it helps. The down side to the pot is it makes me hungry, good if you have cancer I guess, but not so good when your intestines are junk. They have also given me some opiate pain killers, with a warning that they can further bind and slow motility, making symptoms seem better at first, then actually worse. So I use them very sparingly, more just to put me in a better mood than for pain relief. I know I can't take much more and will no doubt be either scheduling another re-sectioning in November or just going into the ER and having a re-sectioning a few days after being admitted, but I really feel like its not going to do much long term good, but at this point the pain is making me desperate and I don't have many options left.

Anybody else out there have these kind of symptoms?:sign0085:
 
Hi, I am new here and have been reading the forum on and off. I am a 36 YR male and was diagnosed with crohns about a year ago after months of misdiagnosis and being told it was all in my head by more than a few doctors. It started as a burning sensation in the early morning and felt like I was really hungry or had had too much coffee. I ignored it for a while thinking it was just the junk food I had ate the night before. I got worse pretty quickly, the pain turned from a burning sensation to a stabbing acute abdominal pain with vomiting. After a few times having that happen, I finally went to the ER. Then came misdiagnosis #1, gastritis. They pumped me with steroids and everything was fine for a few weeks, then the same thing happened again, back to the same ER. This time I actually got to see the hospitals GI doctor, his first question was..."why do you have this crappy insurance?'...nice huh. So after commenting on my crappy insurance plan he basically ordered a colonoscopy and I heard him say..."well if he tolerates the prep (drinking lots of nasty fluid that makes you defecate) than the problem can't be that bad. So drink the nasty sh!t I did, I had a colonostapy and it yielded no real results. I had a small anal fistula a few months before all this started happening and when I was there the doctor who removed/closed it asked me if I had Crohn's disease, I said no, but this was in my medical file and you would think these other ER doctors would have taken the possibility of Crohn's more seriously. So this second trip to the ER and week long stay and battery of tests yielded only inconclusive results. Fast forward a few more months and I started loosing weight as eating like I was used to (big meals in frequently and late at night) was taking its toll, so I just stopped eating until I couldn't bear the hunger. After I had dropped about 60 pounds, my PC was really concerned. I told him that my current GI had run every test in the book and was telling me that he still didn't think I had Crohns. Then I became really sick and was talking with a friend of mine who was a head nurse at Merriam Hospital in Providence RI. He said..."come to my place, we have a full time GI staff. So I drove myself there, puking out the window at just about every stop light for 20 miles, good thing it was late at night or I probably would have been stopped. Sounds crazy, but with two babies and a sleep deprived mom all ready stressed out, I would rather take a dog sled team there alone in July while bleeding from my eyes, than ask her to put the kids in the car at 3 AM and drive me there. Of course she would, but I just can't do that to her. Oh and ambulances here will only take me to the crappy hospital I had already been to twice, so if your asking, that's why I drive myself, slowly and carefully. So I arrive at the new hospital and am treated with a little apprehension, from the staff as again, I look pretty good, but was in excruciating pain. So an MRI pretty quickly showed a bowl obstruction. They medicated me up and monitored me overnight. The obstruction started to pass on its own, so within a few days I was sent home. Still with no diagnosis. About a month went by and again I awoke in agony, nauseous, sweaty and feeling like the guy in Alien when it bursts through his stomach. So again I drive myself to the ER 20 miles away. Same initial treatments showed another bowel obstruction in the same area. The head of surgery came and talked to me. He was/is a really nice guy and he said..."look you have had every test in the book, I think we need to go in there and see whats happening". Although I was frightened by the idea of someone cutting into my intestines, I was desperate for relief, so I agreed to the surgery. Post surgery the doctor said that their was some minor scar tissue and inflammation, but from what he saw it didn't look that bad. I was kinda shocked, with all the pain I was experiencing, I assumed they would find lots of..something in there. After the surgery and leaving the hospital, I was on no meds, no Humira, no biologics, no roids. The biopsy from the intestines they removed, which was only about 3 inches, came back as "highly suspicious of Crohn's". So after the 4-5 week recovery, I felt better, not cured, but better. I was still being very careful with my diet and hoping things would continue to get better. A few months after the surgery the symptoms started to return, slowly at first. They were a little different with regards to intensity and location, but still more or less the same stuff. So I asked my PC for a referral for a new GI Dr. When I went to visit with him (new GI)for the first time, he said..."I noticed you are coming to me after already having a GI Dr. Why do you want to leave him?" I said.."because he is not listening to me for one, I tell him how I feel and he basically tells me I am wrong, or just perhaps more sensitive to digestion sensations than the average person, which is a polite way of telling me its all in my head and I can't keep going to a doctor who doesn't believe what I am telling him." The new GI doctor replied..."well, don't be too mad at him, Crohns is an insidious disease that hides and re-appears. People can have terribly ulcerated GI tracts and experience little to no pain for years, while others like you have only mild visible damage, but high levels of pain. If I wasn't looking at the results of your biopsy and MRi's I wouldn't think you have Crohns either, your symptoms just are not very typical of someone with Crohn's. So I started on oral timed anti-inflammatory pills (Pentasa) it didn't help at all. Then a round of good old Prednesone, and for a few weeks I felt like my old self again! I was stoked, I was able to have a few, ok more than a few beers one night and eat like I used to for the first time in a long time I thought maybe I could live with this. Of course, you can't stay on the roids forever and after a few weeks of being off of them, my symptoms started to return. So my GI guy said, well lets try some Humira, its miracle stuff and seems to help most people who I prescribe it to. So after being on Humira for almost a year, I don't even know if its really working. My GI guy seems to think it at least keeping my Crohn's from getting worse, but over the past 5-6 months my symptoms have been worsening. Lots of pain...daily especially after I try to eat. I can't sleep very long before a wave of cramps wakes me up and am only getting 3-4 hours of "quality" sleep a night. At any given time when I am having a "cramp spasm" as I have come to call them, you can see and feel a hard muscle like bulge push outwards from my lower belly. Its huge, like a fist or a babies arm and visible even through my clothes. I have started having to pee all the time because my gut is putting so much pressure on my bladder. Then their is the noises, you can hear it from 15 feet away in a quiet room. Sometimes it happens while I am talking to clients and they are like..."OMG, are you ok?" I am always comical about it and say something like..."don't listen to him, he is just angry right now.", but they look at me like...wtf is wrong with this guy. Seriously its that loud.

So here I am, a year after my "Diagnosis", with one re-sectioning under my belt and on the "Mirracle drugs" and my GI is telling me that its time for another surgery and there is nothing more he can do. Of course now that I know exactly what that entails, I am hesitant. Especially since I have already had one and it didn't really do much other than keep me out of work for 3 weeks. That said, I can't live this way much longer. My life is exhausting, I have two small children one of which has a very light touch of Autism. I work for myself and own a small plumbing and heating company which means I work an easy 50-70 hours a week. I am up every day at 5:30 Am, which is easy now because I am usually in pain by then and not sleeping anyways. I get the kids up and get them to school so my wife can get some sleep so she can deal with them the rest of the day. I try to eat right while at work, but more frequently I am just not eating and have become weak and just a shell of the 240 muscle bound man I was. After a 10 or 12 hour work day I come home, exhausted and do my best to help with the kids and the house, but I am short on patience and energy as I am almost always in some degree of abdominal pain especially at night and its affecting all my relationships. I am struggling to maintain my life and I can't maintain this very much longer. One thing that has helped me is Marijuana, luckily I live in a medical pot state and it seems to be just enough to take the edge off. It doesn't make the pain go away, but it does "turn the volume down" enough so that I don't feel like I am gona die. It certainly helps with the spasms. I have told my GI that I am self medicating with pot and he is ok with it, but had nothing to offer as to why it helps. The down side to the pot is it makes me hungry, good if you have cancer I guess, but not so good when your intestines are junk. They have also given me some opiate pain killers, with a warning that they can further bind and slow motility, making symptoms seem better at first, then actually worse. So I use them very sparingly, more just to put me in a better mood than for pain relief. I know I can't take much more and will no doubt be either scheduling another re-sectioning in November or just going into the ER and having a re-sectioning a few days after being admitted, but I really feel like its not going to do much long term good, but at this point the pain is making me desperate and I don't have many options left.

Anybody else out there have these kind of symptoms?:sign0085:
So sorry to hear what you are going through. My story is different, but also affects quality of life and puts me back in bed with severe pain usually once daily for 2-5 hours. My pain is lower and middle left only. Mayo has given me every test and they see Crohn’s only on right side at terminal ileum and they have no answer for left side pain. Crohns was diagnosed in 2003 and was managed without meds for years. Then in 2014 I started noticing left side pain so had 2014 colonoscopy, then 2016 colonoscopy; then 2020 colonoscopy, endoscopy; PillCam, MRI, CtScan, Breath test (showed high methane); but nothing new except kidney cancer left kidney returned after 2003 bilateral partial nephrectomy. Kidney surgeon watching it as small and says kidneys have no nerve endings, so doesn’t explain pain on left. Colonoscopy in 2020 brought soon after loss of 20% body weight and I was thin already. Unable to gain back weight. No one confirmed but I am suspiciou
Hi, I am new here and have been reading the forum on and off. I am a 36 YR male and was diagnosed with crohns about a year ago after months of misdiagnosis and being told it was all in my head by more than a few doctors. It started as a burning sensation in the early morning and felt like I was really hungry or had had too much coffee. I ignored it for a while thinking it was just the junk food I had ate the night before. I got worse pretty quickly, the pain turned from a burning sensation to a stabbing acute abdominal pain with vomiting. After a few times having that happen, I finally went to the ER. Then came misdiagnosis #1, gastritis. They pumped me with steroids and everything was fine for a few weeks, then the same thing happened again, back to the same ER. This time I actually got to see the hospitals GI doctor, his first question was..."why do you have this crappy insurance?'...nice huh. So after commenting on my crappy insurance plan he basically ordered a colonoscopy and I heard him say..."well if he tolerates the prep (drinking lots of nasty fluid that makes you defecate) than the problem can't be that bad. So drink the nasty sh!t I did, I had a colonostapy and it yielded no real results. I had a small anal fistula a few months before all this started happening and when I was there the doctor who removed/closed it asked me if I had Crohn's disease, I said no, but this was in my medical file and you would think these other ER doctors would have taken the possibility of Crohn's more seriously. So this second trip to the ER and week long stay and battery of tests yielded only inconclusive results. Fast forward a few more months and I started loosing weight as eating like I was used to (big meals in frequently and late at night) was taking its toll, so I just stopped eating until I couldn't bear the hunger. After I had dropped about 60 pounds, my PC was really concerned. I told him that my current GI had run every test in the book and was telling me that he still didn't think I had Crohns. Then I became really sick and was talking with a friend of mine who was a head nurse at Merriam Hospital in Providence RI. He said..."come to my place, we have a full time GI staff. So I drove myself there, puking out the window at just about every stop light for 20 miles, good thing it was late at night or I probably would have been stopped. Sounds crazy, but with two babies and a sleep deprived mom all ready stressed out, I would rather take a dog sled team there alone in July while bleeding from my eyes, than ask her to put the kids in the car at 3 AM and drive me there. Of course she would, but I just can't do that to her. Oh and ambulances here will only take me to the crappy hospital I had already been to twice, so if your asking, that's why I drive myself, slowly and carefully. So I arrive at the new hospital and am treated with a little apprehension, from the staff as again, I look pretty good, but was in excruciating pain. So an MRI pretty quickly showed a bowl obstruction. They medicated me up and monitored me overnight. The obstruction started to pass on its own, so within a few days I was sent home. Still with no diagnosis. About a month went by and again I awoke in agony, nauseous, sweaty and feeling like the guy in Alien when it bursts through his stomach. So again I drive myself to the ER 20 miles away. Same initial treatments showed another bowel obstruction in the same area. The head of surgery came and talked to me. He was/is a really nice guy and he said..."look you have had every test in the book, I think we need to go in there and see whats happening". Although I was frightened by the idea of someone cutting into my intestines, I was desperate for relief, so I agreed to the surgery. Post surgery the doctor said that their was some minor scar tissue and inflammation, but from what he saw it didn't look that bad. I was kinda shocked, with all the pain I was experiencing, I assumed they would find lots of..something in there. After the surgery and leaving the hospital, I was on no meds, no Humira, no biologics, no roids. The biopsy from the intestines they removed, which was only about 3 inches, came back as "highly suspicious of Crohn's". So after the 4-5 week recovery, I felt better, not cured, but better. I was still being very careful with my diet and hoping things would continue to get better. A few months after the surgery the symptoms started to return, slowly at first. They were a little different with regards to intensity and location, but still more or less the same stuff. So I asked my PC for a referral for a new GI Dr. When I went to visit with him (new GI)for the first time, he said..."I noticed you are coming to me after already having a GI Dr. Why do you want to leave him?" I said.."because he is not listening to me for one, I tell him how I feel and he basically tells me I am wrong, or just perhaps more sensitive to digestion sensations than the average person, which is a polite way of telling me its all in my head and I can't keep going to a doctor who doesn't believe what I am telling him." The new GI doctor replied..."well, don't be too mad at him, Crohns is an insidious disease that hides and re-appears. People can have terribly ulcerated GI tracts and experience little to no pain for years, while others like you have only mild visible damage, but high levels of pain. If I wasn't looking at the results of your biopsy and MRi's I wouldn't think you have Crohns either, your symptoms just are not very typical of someone with Crohn's. So I started on oral timed anti-inflammatory pills (Pentasa) it didn't help at all. Then a round of good old Prednesone, and for a few weeks I felt like my old self again! I was stoked, I was able to have a few, ok more than a few beers one night and eat like I used to for the first time in a long time I thought maybe I could live with this. Of course, you can't stay on the roids forever and after a few weeks of being off of them, my symptoms started to return. So my GI guy said, well lets try some Humira, its miracle stuff and seems to help most people who I prescribe it to. So after being on Humira for almost a year, I don't even know if its really working. My GI guy seems to think it at least keeping my Crohn's from getting worse, but over the past 5-6 months my symptoms have been worsening. Lots of pain...daily especially after I try to eat. I can't sleep very long before a wave of cramps wakes me up and am only getting 3-4 hours of "quality" sleep a night. At any given time when I am having a "cramp spasm" as I have come to call them, you can see and feel a hard muscle like bulge push outwards from my lower belly. Its huge, like a fist or a babies arm and visible even through my clothes. I have started having to pee all the time because my gut is putting so much pressure on my bladder. Then their is the noises, you can hear it from 15 feet away in a quiet room. Sometimes it happens while I am talking to clients and they are like..."OMG, are you ok?" I am always comical about it and say something like..."don't listen to him, he is just angry right now.", but they look at me like...wtf is wrong with this guy. Seriously its that loud.

So here I am, a year after my "Diagnosis", with one re-sectioning under my belt and on the "Mirracle drugs" and my GI is telling me that its time for another surgery and there is nothing more he can do. Of course now that I know exactly what that entails, I am hesitant. Especially since I have already had one and it didn't really do much other than keep me out of work for 3 weeks. That said, I can't live this way much longer. My life is exhausting, I have two small children one of which has a very light touch of Autism. I work for myself and own a small plumbing and heating company which means I work an easy 50-70 hours a week. I am up every day at 5:30 Am, which is easy now because I am usually in pain by then and not sleeping anyways. I get the kids up and get them to school so my wife can get some sleep so she can deal with them the rest of the day. I try to eat right while at work, but more frequently I am just not eating and have become weak and just a shell of the 240 muscle bound man I was. After a 10 or 12 hour work day I come home, exhausted and do my best to help with the kids and the house, but I am short on patience and energy as I am almost always in some degree of abdominal pain especially at night and its affecting all my relationships. I am struggling to maintain my life and I can't maintain this very much longer. One thing that has helped me is Marijuana, luckily I live in a medical pot state and it seems to be just enough to take the edge off. It doesn't make the pain go away, but it does "turn the volume down" enough so that I don't feel like I am gona die. It certainly helps with the spasms. I have told my GI that I am self medicating with pot and he is ok with it, but had nothing to offer as to why it helps. The down side to the pot is it makes me hungry, good if you have cancer I guess, but not so good when your intestines are junk. They have also given me some opiate pain killers, with a warning that they can further bind and slow motility, making symptoms seem better at first, then actually worse. So I use them very sparingly, more just to put me in a better mood than for pain relief. I know I can't take much more and will no doubt be either scheduling another re-sectioning in November or just going into the ER and having a re-sectioning a few days after being admitted, but I really feel like its not going to do much long term good, but at this point the pain is making me desperate and I don't have many options left.

Anybody else out there have these kind of symptoms?:sign0085:
So sorry about your suffering. My symptoms are a little different but involve severe pain and put me in bed for 2-5 hours usually in afternoon. Painkillers don’t help; just have to wait for pain to pass. I am suspicious about PEG-3350 (polyethylene glycol) ingredient in MuviPrep I used for colonoscopy prep, as I very quickly dropped 20% body weight ( was already thin). Can’t regain; B12 dropped severely; D3 dropped; my perfect blood work suddenly had lots of issues. My pain is lower left and middle left. Mayo has given me every test and no reason for left side pain, as my Crohns is terminal ileum in right side. I have small renal cell carcinoma returned on left kidney (Mayo watching) but surgeon said kidneys have no nerve endings so no pain from it. I’ve had PillCam, endoscopy, colonoscopy, Breath test (shows high methane), MRI, CTScan. Not sure where to go from here. Would appreciate any one sharing ideas.
 
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