A
Alaria
Guest
Hello Everyone 
I just found this board, which has been a wealth of information for me. I was tentatively diagnosed with CD about a month ago, although I’ve had what I know realize were flare ups for years now. Always before I had been told it was just IBS and that I needed to reduce stress and increase fiber to "feel better". Most of my flare ups would last for several weeks, and would consist of bloating, abdominal pain, diarhhrea, and some blood off and on. Well, last July I went into another flare up that was particularly bad. My doctor thought I had appendicitis, the pain in my lower right side, just below the level of my navel, was so bad. I was sent for a full CT scan of my abdomen. It turned out that while my appendix was normal, there was thickening and narrowing in my transverse colon. The initial impression from the radiologist was IBD. I was sent for a colonoscopy. When I went to the initial appt, without even looking at my chart, or hearing what was going on with me, he decided that all that was wrong was a pulled muscle( by this time, I had continuous diarhhrea 6-8 times a day, low grade fever, chills, blood, bloating, and pain for about 5 weeks). He declared that CT scans were never correct but since he'd do the colonoscopy anyway. (I should have followed my first instincts and demanded to see someone else but I didn't). The colonoscopy lasted 7 minutes and he decided I really didn’t need pain meds because during the procedure I was screaming and the nurse had to hold me down on the table. He then pulled out the scope and said "see, I told you it was just a pulled muscle" and walked away.
I went back to my own doc later that week and told him what had happened. He immediately sent me to a specialist at the University, even though this clinic was not in my insurance plan, and I would have to pay out of pocket to be seen. This doc was wonderful. He listened to what I had to say, what my symptoms had been, etc. By this time, I had also lost my appetite, and so was eating only about 400-500 calories a day, mostly protein and a little dairy, that I was forcing myself to eat. By the time I was able to see him, I had lost approximately 16 pounds in about 12 days, going from 175 to 159. While I knew I needed to lose about 30 pounds to be in a good weight, losing it that quickly is not good. Based on my symptoms and the abnormal CT scan, his initial impression was CD. A blood test came back negative, though he said it was accurate only about 90% of the time, and a small bowel follow through showed that there were no gross abnormalities with there. But by my 2nd appt with him, I had lost another 8 pounds (so 24 pounds in about 4 weeks).
My symptoms continued to be diarrhea, some dark blood, bloating, abdominal pain, irritability, exhaustion, and trouble concentrating and remembering things. I can tell when matter is either in the ascending colon or the transverse colon. In the ascending, it feels like an ulcer or open sore. The pain is sharp and very painful, just in one small area. I know it’s on my colon because I can move it slightly, and when it’s filled, the pain is even worse. The transverse is more widespread and more of an ache or cramp, which I guess makes sense given that's where the CT scan showed the most inflammation.
Before this latest flare up, my diet consisted mainly of fruits, vegetables, high fiber, low fat dairy and lean protein. Since July? I've not been able to eat any fruits or vegetables, or other foods with any amount of fiber, other than bananas and melons. Everything else goes through me in about 16 hours. Eating even well cooked vegetables still makes the bloating and pain much worse as well as the diarrhea.
On my 2nd visit, he decided that this was most likely Crohn's and started me on Entocort, though he has not definitely diagnosed this yet. I'm supposed to see him again in about another 2 weeks. So far, the Entocort seems to be helping some. The pain is lessoned, the BM's have gotten better and less frequent (unless I eat something with fiber or fruits/vegetables). But I at least have somewhat of an appetite back again and my weight has stabilized at about 153 or so. It doesn't help that my job is fairly stressful, and from what I've read, stress can worsen flare ups.
Part of what I'm wondering from others on this board is if these symptoms are similar to what others have, especially the pain on the lower right side. I was told when the small bowel follow through was done that it was most likely a small ulcer that wouldn't likely show up unless you were actively looking for it but that it would most likely be very painful. I'm also wondering how others deal with stressful situations when the typical stress management techniques don't work (I'm a licensed psychologist at a state psychiatric hospital so the traditional stuff I've already tried with little success). I'm also wondering for those who have been on Entocort how long it took before they noticed any significant reduction in their symptoms or were able to go into remission?
I have had some good days and lots of bad days these last almost 4 months now. It will be nice to have a group to talk to who knows what I'm going through, and who are dealing with the same or similar issues. Even though my husband is supportive, he struggles sometimes with the constant symptoms. I've been off work for the last 3 weeks for an unrelated surgery, and due to go back on Monday. The thought of going back to that stress is not appealing, due to the constant stress from the administration and the nursing staff. As an example, the average length of employment for psychologists is about 2 years due to stress over a myriad of issues. I have 3 students that I am responsible for until May of next year, which makes leaving at this point very very difficult. So, as with other people, it will also be good to have a place to be able to vent. Maybe that will help to keep the symptoms down as well.
Thanks for listening! I know this is long but I do look forward to getting to meet and know people here!
Alaria
I just found this board, which has been a wealth of information for me. I was tentatively diagnosed with CD about a month ago, although I’ve had what I know realize were flare ups for years now. Always before I had been told it was just IBS and that I needed to reduce stress and increase fiber to "feel better". Most of my flare ups would last for several weeks, and would consist of bloating, abdominal pain, diarhhrea, and some blood off and on. Well, last July I went into another flare up that was particularly bad. My doctor thought I had appendicitis, the pain in my lower right side, just below the level of my navel, was so bad. I was sent for a full CT scan of my abdomen. It turned out that while my appendix was normal, there was thickening and narrowing in my transverse colon. The initial impression from the radiologist was IBD. I was sent for a colonoscopy. When I went to the initial appt, without even looking at my chart, or hearing what was going on with me, he decided that all that was wrong was a pulled muscle( by this time, I had continuous diarhhrea 6-8 times a day, low grade fever, chills, blood, bloating, and pain for about 5 weeks). He declared that CT scans were never correct but since he'd do the colonoscopy anyway. (I should have followed my first instincts and demanded to see someone else but I didn't). The colonoscopy lasted 7 minutes and he decided I really didn’t need pain meds because during the procedure I was screaming and the nurse had to hold me down on the table. He then pulled out the scope and said "see, I told you it was just a pulled muscle" and walked away.
I went back to my own doc later that week and told him what had happened. He immediately sent me to a specialist at the University, even though this clinic was not in my insurance plan, and I would have to pay out of pocket to be seen. This doc was wonderful. He listened to what I had to say, what my symptoms had been, etc. By this time, I had also lost my appetite, and so was eating only about 400-500 calories a day, mostly protein and a little dairy, that I was forcing myself to eat. By the time I was able to see him, I had lost approximately 16 pounds in about 12 days, going from 175 to 159. While I knew I needed to lose about 30 pounds to be in a good weight, losing it that quickly is not good. Based on my symptoms and the abnormal CT scan, his initial impression was CD. A blood test came back negative, though he said it was accurate only about 90% of the time, and a small bowel follow through showed that there were no gross abnormalities with there. But by my 2nd appt with him, I had lost another 8 pounds (so 24 pounds in about 4 weeks).
My symptoms continued to be diarrhea, some dark blood, bloating, abdominal pain, irritability, exhaustion, and trouble concentrating and remembering things. I can tell when matter is either in the ascending colon or the transverse colon. In the ascending, it feels like an ulcer or open sore. The pain is sharp and very painful, just in one small area. I know it’s on my colon because I can move it slightly, and when it’s filled, the pain is even worse. The transverse is more widespread and more of an ache or cramp, which I guess makes sense given that's where the CT scan showed the most inflammation.
Before this latest flare up, my diet consisted mainly of fruits, vegetables, high fiber, low fat dairy and lean protein. Since July? I've not been able to eat any fruits or vegetables, or other foods with any amount of fiber, other than bananas and melons. Everything else goes through me in about 16 hours. Eating even well cooked vegetables still makes the bloating and pain much worse as well as the diarrhea.
On my 2nd visit, he decided that this was most likely Crohn's and started me on Entocort, though he has not definitely diagnosed this yet. I'm supposed to see him again in about another 2 weeks. So far, the Entocort seems to be helping some. The pain is lessoned, the BM's have gotten better and less frequent (unless I eat something with fiber or fruits/vegetables). But I at least have somewhat of an appetite back again and my weight has stabilized at about 153 or so. It doesn't help that my job is fairly stressful, and from what I've read, stress can worsen flare ups.
Part of what I'm wondering from others on this board is if these symptoms are similar to what others have, especially the pain on the lower right side. I was told when the small bowel follow through was done that it was most likely a small ulcer that wouldn't likely show up unless you were actively looking for it but that it would most likely be very painful. I'm also wondering how others deal with stressful situations when the typical stress management techniques don't work (I'm a licensed psychologist at a state psychiatric hospital so the traditional stuff I've already tried with little success). I'm also wondering for those who have been on Entocort how long it took before they noticed any significant reduction in their symptoms or were able to go into remission?
I have had some good days and lots of bad days these last almost 4 months now. It will be nice to have a group to talk to who knows what I'm going through, and who are dealing with the same or similar issues. Even though my husband is supportive, he struggles sometimes with the constant symptoms. I've been off work for the last 3 weeks for an unrelated surgery, and due to go back on Monday. The thought of going back to that stress is not appealing, due to the constant stress from the administration and the nursing staff. As an example, the average length of employment for psychologists is about 2 years due to stress over a myriad of issues. I have 3 students that I am responsible for until May of next year, which makes leaving at this point very very difficult. So, as with other people, it will also be good to have a place to be able to vent. Maybe that will help to keep the symptoms down as well.
Thanks for listening! I know this is long but I do look forward to getting to meet and know people here!
Alaria
