So I have been following this forum off and on for a couple of years but more recently these past few months. I am 26 and have been having GI symptoms for at least 11 years. My older sister has severe Crohn's Disease, my mother has/had Diverticulitis, my father refuses to go to the doctor but I have grown up thinking that extreme diarrhea and pain is normal because he always had it. Not sure about blood or other factors into that. This is also the case with both of his parents, with the diarrhea symptoms and my grandfather actually passed away from colon cancer and liver disease, but I am not sure if there was ever any sort of IBD or anything that was diagnosed for him but it wouldn't surprise me if there was. I guess I should start off with the beginning for my own personal experience.
The first symptoms that I remember was extreme gas pains when I was 15 years old, it happened off and on and was extremely painful. But it was something that I didn't to talk about and I thought it was normal so I would just curl up into a ball and wait for it to pass. After that I would have random small fits of diarrhea but nothing that stands out because I was always told it was the flu or something I ate.
I was 17 when I had the first blood in the toilet and this will be TMI but I dont have any other way to explain it. Basically I thought I was having watery diarrhea but what came out was bright red blood and it would fill up the toilet. I was comfortable telling anyone about it, and to make myself feel better I told myself that it was a hemorrhoid that was bleeding. Which I do and did have at the time but that did not explain why it felt like I was "filling up" and then needed to "go" and it was all blood. That happened for a day or two and then just went away. I was also in pain but just felt like the typical stomach cramps. I went a maybe a year until that happened again. with random diarrhea and gas cramps. When it happened again it was almost exactly the same as the first time. Around this time I started having red, hot, swelling around my knees which I went to the doctor was told I had erythema nodosum.
By this time I have just turned 19 and recently found out I was pregnant with my first child. And I dont remember that many symptoms for a few years. Maybe some "flu like" stomach situations but nothing that clearly stands out to me worth mentioning.
Then at 22, I had my second child and a few weeks after that I started having constant diarrhea and then came the blood. I went to the doctor and told her and she told me to start the BRAT diet and if it didnt go away (I was afraid to mention the blood at that point) I would need to take stool samples. This was very intimidating to me so I passed it all off as just weird symptoms after having a baby, even though I had just found out that my sister has Crohn's and had to have surgeries and has been hospitalized numerous times. After a few weeks it went away and I just moved forward again. Also around this time the swelling and redness in my knees has come back periodically.
Here I am at 25, and I am constantly having sharp pains in my abdomen on the right side mostly but occasionally have it in the left. The diarrhea started to happen more recently for the past 2 years getting more and more frequent with so much mucus. It isnt constant but I either have diarrhea or it is hard to go but the stool is not hard like constipation (unless i am dehydrated which I often feel i am)) stools they are small and soft but are hard to get out and i feel the stomach cramps like I should have diarrhea but its stuck. No blood since the last time except small amounts in the mucus.
But those are the symptoms and some experiences with doctors. What really bothers me is my journey with doctors this past year. In January, I started having severe joint pain in my hands, feet, knees and elbows, with the hot red swelling in my knees and large toe joints. This happens almost anytime I stand for more than 15-20 minutes. I went to my GP for the joint pain and she took a blood panel and ANA direct and Anti-dsDNA, and and Rheumatoid factor, all of these negative so she sent me to a rheumatoid doctor and she did even more lupus tests and xrays on my joints. those were also negative and the xrays showed no damage. so no answers there. after that in april i decided to go to an internal medicine doctor and she looked at my blood tests that my GP and rheumy took and family history. she looked me over pressed on my stomach and told me she thought that it looked like I was having arthritis symptoms caused by IBD and told me I needed a colonsoscopy which was scheduled for June 10. At the time I was having the most normal stools I had had in two years and wasnt convinced so she said if they remained normal she would be okay with rescheduling for a later date. Well the GI symptoms did come back and were pretty bad, still no blood. So i went through with the colonoscopy and the specialist (after me calling over and over for my biopsy results) said I had mild lesions in my terminal ileum that could indicate crohns but the biopsies were inconclusive to that. So she scheduled a MRE which those results said the same thing. And thats where I am at.
One other situation is my brother in-law is a oncologist and one of his specialties is gastrointestinal cancer. So I have kept him in the loop and he actually spoke to the doctor who did my colonoscopy (who I havent even spoken too just her nurse) and he isnt convinced that it is crohns because these tests dont say it is and he suggests getting a second opinion, which I support.
I guess Im stuck in this middle area like a lot of you. I dont know what I have, I feel like it could be crohns. My doctor I guess isnt 100% comfortable it is crohns but is willing to prescribe Entocort EC (but I cant afford it even the generic brand and my family wont help me pay for it without being diagnosed or sure I actually need it.) The wait stresses me out, I am constantly second guessing myself about these symptoms.
and I dont know if my GI doctor knows any of these symptoms because I originally went to the internist for joint paint and I've never had an appointment with this GI doctor to tell her any of this. i have only told her nurse a week after my colonoscopy that I was having pain and blood stained mucus in my diarrhea. I feel so lost and like all of these doctors only know half of the story because I myself have just now put the pieces together and the nerve to tell all of the details. I know that that is my fault but now I feel that if i call or go in with this they wont believe me. I dont want to have crohn's or any IBD but it also makes me feel like I am put on the back burner when my family starts to mention IBS.
ugh. I just dont know what to do about any of thise.
The first symptoms that I remember was extreme gas pains when I was 15 years old, it happened off and on and was extremely painful. But it was something that I didn't to talk about and I thought it was normal so I would just curl up into a ball and wait for it to pass. After that I would have random small fits of diarrhea but nothing that stands out because I was always told it was the flu or something I ate.
I was 17 when I had the first blood in the toilet and this will be TMI but I dont have any other way to explain it. Basically I thought I was having watery diarrhea but what came out was bright red blood and it would fill up the toilet. I was comfortable telling anyone about it, and to make myself feel better I told myself that it was a hemorrhoid that was bleeding. Which I do and did have at the time but that did not explain why it felt like I was "filling up" and then needed to "go" and it was all blood. That happened for a day or two and then just went away. I was also in pain but just felt like the typical stomach cramps. I went a maybe a year until that happened again. with random diarrhea and gas cramps. When it happened again it was almost exactly the same as the first time. Around this time I started having red, hot, swelling around my knees which I went to the doctor was told I had erythema nodosum.
By this time I have just turned 19 and recently found out I was pregnant with my first child. And I dont remember that many symptoms for a few years. Maybe some "flu like" stomach situations but nothing that clearly stands out to me worth mentioning.
Then at 22, I had my second child and a few weeks after that I started having constant diarrhea and then came the blood. I went to the doctor and told her and she told me to start the BRAT diet and if it didnt go away (I was afraid to mention the blood at that point) I would need to take stool samples. This was very intimidating to me so I passed it all off as just weird symptoms after having a baby, even though I had just found out that my sister has Crohn's and had to have surgeries and has been hospitalized numerous times. After a few weeks it went away and I just moved forward again. Also around this time the swelling and redness in my knees has come back periodically.
Here I am at 25, and I am constantly having sharp pains in my abdomen on the right side mostly but occasionally have it in the left. The diarrhea started to happen more recently for the past 2 years getting more and more frequent with so much mucus. It isnt constant but I either have diarrhea or it is hard to go but the stool is not hard like constipation (unless i am dehydrated which I often feel i am)) stools they are small and soft but are hard to get out and i feel the stomach cramps like I should have diarrhea but its stuck. No blood since the last time except small amounts in the mucus.
But those are the symptoms and some experiences with doctors. What really bothers me is my journey with doctors this past year. In January, I started having severe joint pain in my hands, feet, knees and elbows, with the hot red swelling in my knees and large toe joints. This happens almost anytime I stand for more than 15-20 minutes. I went to my GP for the joint pain and she took a blood panel and ANA direct and Anti-dsDNA, and and Rheumatoid factor, all of these negative so she sent me to a rheumatoid doctor and she did even more lupus tests and xrays on my joints. those were also negative and the xrays showed no damage. so no answers there. after that in april i decided to go to an internal medicine doctor and she looked at my blood tests that my GP and rheumy took and family history. she looked me over pressed on my stomach and told me she thought that it looked like I was having arthritis symptoms caused by IBD and told me I needed a colonsoscopy which was scheduled for June 10. At the time I was having the most normal stools I had had in two years and wasnt convinced so she said if they remained normal she would be okay with rescheduling for a later date. Well the GI symptoms did come back and were pretty bad, still no blood. So i went through with the colonoscopy and the specialist (after me calling over and over for my biopsy results) said I had mild lesions in my terminal ileum that could indicate crohns but the biopsies were inconclusive to that. So she scheduled a MRE which those results said the same thing. And thats where I am at.
One other situation is my brother in-law is a oncologist and one of his specialties is gastrointestinal cancer. So I have kept him in the loop and he actually spoke to the doctor who did my colonoscopy (who I havent even spoken too just her nurse) and he isnt convinced that it is crohns because these tests dont say it is and he suggests getting a second opinion, which I support.
I guess Im stuck in this middle area like a lot of you. I dont know what I have, I feel like it could be crohns. My doctor I guess isnt 100% comfortable it is crohns but is willing to prescribe Entocort EC (but I cant afford it even the generic brand and my family wont help me pay for it without being diagnosed or sure I actually need it.) The wait stresses me out, I am constantly second guessing myself about these symptoms.
and I dont know if my GI doctor knows any of these symptoms because I originally went to the internist for joint paint and I've never had an appointment with this GI doctor to tell her any of this. i have only told her nurse a week after my colonoscopy that I was having pain and blood stained mucus in my diarrhea. I feel so lost and like all of these doctors only know half of the story because I myself have just now put the pieces together and the nerve to tell all of the details. I know that that is my fault but now I feel that if i call or go in with this they wont believe me. I dont want to have crohn's or any IBD but it also makes me feel like I am put on the back burner when my family starts to mention IBS.
ugh. I just dont know what to do about any of thise.