I apologize ahead of time for probably what will be a lengthy post.
I am a 41 yr old female. I have been dealing with health issues now for going on 7 yrs. I will give as much detail as I can.
In 2004 I started having severe stomach pain, felt like it was right up under my right rib, the pain would go through to my back at times. I was also experiencing nausea and vomiting. I was also having diarrhea but the vomiting was way more bothersome at the time. After several trips to our family doctor where I was put in the care of the NP, I was finally scheduled for a ultra sound of my gall bladder. I did not make it to the scheduled test as I was awoke in the middle of the night with excruciating pain that sent me to the ER. They preformed the ultra sound and said I had gall stones, they referred me to a surgeon to have it removed.
With in 3 weeks of having my gall bladder removed I was sick again. Still vomiting but the diarrhea was getting worse. Several months later and several trips to the NP she decides to send me to a gastro doc for a scope of my stomach. Scope showed peptic ulcers and GERD. I was given meds for acid reflux, meds for anti nausea. This kept on for several more months with the diarrhea getting worse. Was sent back to gastro doc for scope of colon. He found a couple polyps which were removed. I was told I had Diverticulitis. We asked at that time was there any special diet I should follow and was told no, regular diet. I returned to gastro doc a few more times with no improvement. I was in the bathroom one evening experiencing severe stomach cramps and got light headed and passed out. I had been getting light headed for a while, while in the bathroom but had never passed out. I made another appointment with gastro doc, and was told "I'm not that concerned about that, I have a patient that passes out up to 9x a week" to myself I was thinking ok she may be use to it, but it scared the H out of me. I decided then I needed a new doc.
Move forward a few years later, I have been poked and prodded several more times and am beginning to feel like a lab rat. I have been told it could be dumping syndrome, then told it couldn't be that as I did not have surgery on my stomach itself so it could not be that. I had been told it could be something called a phantom gall bladder, not sure if that is something real or not, but just didn't sound right. I would say this is now 3 going on 4 yrs into this, I was completely frustrated. I had no diagnosis and was not getting any better. It was getting harder and harder to make it to work and when I did it was hard to stay. All these trips to the bathroom I was making I was developing a bad case of Hemorrhoids which were bleeding most of the time. I felt like I was passing razor blades during BM's and then it got to where I had the razor blade feeling all the time, I couldn't sit, stand or lay and be comfortable. I would go from the toilet to the tub. I gave up my job before I got fired (another long story). I had seen regular doctors, ER doctors and even 2 surgeons for what I was told was just hemorrhoids go home soak in a warm tub of water and use preparation H. Three years after that I finally find out it was all due to a fissure and several internal and external hemorrhoids. I had the surgery (worst pain I have ever had in my life).
4 years into all this I make another appointment with a new gastro doc. Go through the scope of both ends, CT scans, multiple blood and stool test and am told by this one, he doesn't know what it is and he is going to send me back to the family doc and if they want to send me somewhere else they can. I have just about give up by now, I figure I am just going to have to learn to live with all of this.
I drag myself to another gastro doc, once again scope both ends, blood work and CT scan. I am told that he believes it's IBS. I am given anti spasmodics and told that this diagnosis was a "garbage pale" diagnosis.
Now all through this me and my husband, who is a great support through all of this, are keeping diary after diary. Foods I would eat that would make it worse, stress factors, anything we could think of to try to maybe be able to control this, with no luck.
I gave up on doctors for a while again, it was just to hard to go in and be treated as if I was making all this up or exaggerating my symptoms.
With the food diaries we had no luck, I could eat something today and it not bother me at all, eat the same thing 2 days from now and just be tore up. So far the only thing we have been able to figure out by the diaries is that there are 3 weeks of the month this affects me the worst, the week before, the week of and the week after my period. As far as stress, if I said I had none that wouldn't be true. Everyone has stress, but I over many years and many trials have learned, what is going to happen will happen, all I can do is stay as calm as I can and try to get through whatever it is that is stressing me. Pretty much just give it to God and let him guide me. I have not found any relief from medications either. I have been given most of the meds prescribed for IBS and even low doses of anti depressants. Three times since all of this has started I have been given a steroid for 1 week, twice for headaches, and once for the swelling in my knee a few weeks before my scope of the knee. All three times while taking the steroid for 1 week, I would have almost no symptoms of anything. I was not woke up with a headache, I could eat what I wanted and seemed to go to the bathroom normally. I did have headaches but not daily, the first time I had 3 headaches the whole week, and only 2 episodes of diarrhea. I do not know what significance this had but it did seem to make some difference.
I will now list the symptoms I have (I will start at my head and go down) and any other diagnosis I have.
Headaches- I have these daily. I have seen dr.'s for them and am told I have migraine and tension headaches. I am woke up every morning by a headache.
Eye twitching- it seems to be more around my right eye but now can be anywhere, feet, legs, arms and I have even gotten them in the arches of my feet.
Swollen area on the right side of my neck, throat area. If you were to measure from the middle of my throat, it starts about 1/4" from there (middle) and goes up about 2" at a diagonal . When I am in the bathroom cramping and straining this area becomes more rounded and sticks out about 2"
Severe abdominal pain and cramping, bloating. Diarrhea that alternates with a feeling that I can go, I would not say constipation as it isn't hard stool. Just sometimes feels like everything is just swollen and wont come out. My stool when it is solid is never any bigger around than the size of a pencil.
Pain in the area most people call their tail bone. Feels like a spasm and throbs. Still have bouts with the hemorrhoids they do bleed but I also find blood in my stool, in the bowl and on the paper.
Joint pain. I have had a scope on my left knee but at times every joint in my body hurts. Diagnosed with osteoarthritis in left knee.
I have a rash all over my back that wont go away. At first I thought it was just acne, but this rash itches, it gets better but never goes away.
I have sweating spells, not like hot flashes. My face doesn't become flushed, and the sweats are cold clammy sweats all over. I don't even have to be doing anything to break out in them. When I am sweating, my hands and feet are ice cold.
Generally feel like crap, no energy, poor sleep, can be irritable and pretty much no sex drive.
My weight has been all over the place. In the beginning when all this started I was in a women's size 14 in the first few months after gall bladder surgery I went down to a size 10. I stayed that size for a few years. Then with in the last year I have put all that weight and added another 40 lbs to now be in a size 20. All of my weight gain is in my face, and mid section. The size 20 pants fit in the waist but are so loose in the legs. I have went from a Large top to a 2 sometimes 3x shirts.
With in the last 3 mos I have been having a dull pain on both sides of my back, feels like the start of a kidney infection. I have had kidney stones, the last one being 20 yrs ago. The pain comes and goes and doesn't get unbearable just dull.
My skin is much oiler, I usually have always had thick hair, but now it is thinning. With in the last 2 mos it was like I woke up and nothing fit, what fit yesterday doesn't fit today but I have only gained 1 lb. My feet, legs and hands all swell, my legs swell to the point you can leave dents in them. My face gets puffy. And feet swell to the point it feels like they will split when I step on them. I have awful pain that goes from my hip down to the bottom of my foot.
I have been tested for Cushings, Thyroid, carcinoids (I think thats what he called them) Lupus. I have been told that I have a small cyst in my left kidney, cyst on my left ovary. I have had an ultra sound for the kidney cyst and was told it was nothing to worry about, it was small and fluid filled. I was told that my last CT (about 1 mo ago) showed 2 masses on my right kidney but did not show up on the ultra sound. My CT also shows mild thickening. Other than this all my labs and test come back normal.
I have decided to see an internist instead of another GI. No one was looking past IBS for a cause and no treatment the GI was giving was working. I definitely feel more comfortable with the new doc. He believes my symptoms are as severe as I claim they are, he listens to what I have to say and doesn't just run in and out of the room in 5 min. When ordering test, he is cautious, not to just order them because they have them. He has said though he does not agree with the IBS diagnosis. I had asked if this could be hormonal related due to the weight, sweating, and worsening of symptoms around my periods. He didn't think it was hormonal but didn't dismiss it either, he said they had someone there in the office that I could consult with about hormones. I made the appointment and seen her. She too doesn't think its IBS nor does she think its hormonal. She thinks its all due to inflammation. She is wanting me to use AloeDophilus a probiotic and try another elimination diet. I have ordered the probiotic but a lot of the diet stuff I don't eat anyway. She thinks this inflammation is causing all of my symptoms.
My question are, if my digestive system is inflamed is this IBD instead of IBS?
Is the fact that I have mild wall thickening, seen on CT scans, evident of IBD?
Is it possible I can be this inflamed for 7 yrs?
Can I have IBD and all my blood work come back normal?
Is there a test that will tell if it is IBD? If so what tests will tell if it is or not.
Can I have IBD and it cause inflammation everywhere else? Like my arthritis? My headaches?
Has anyone with IBD used the probiotic mentioned and if so did they help? '
Anyone have any other idea what this could be? Could it all be inflammation or could it be more than one thing going on at once?
The internist suggested a consult with Cleavland Clinic. Any thoughts there? Or if it is IBD should I see about maybe consult with the GI guy in Chicago area I have seen mentioned in other posts?
What I do know: I know before my gall bladder attack, I was fairly healthy, I had headaches, as far as I knew. VERY outgoing and active, happy, content person. After gall bladder surgery, nightmare that I can't seem to wake up from. I have no energy, I go when I can, meaning depression is not stopping me from doing anything, what stops me is not knowing where we are going, how long we will be gone, will we be eating while we are out and if so where are the bathrooms or the quickest route home. I would love to go and do more, but I really don't want to be caught out in a public restroom and it just happen to be one of those times I end up passing out. I do stay home a lot, but I have lots of activities that keep me occupied and help me feel somewhat productive. Going out requires some planning sometimes but I do make every effort to do as much as I can. I know that I am not feeling or getting any better, it seems to just be getting worse, and the good days are fading.
I apologize again for the length of this post, I just feel the need to not leave anything out, never know it may be the one thing that may help me finally get an answer. I use to just wish someone would tell me what this was, now I just want them to get it right. If I haven't provided something that may help in someone giving advice please let me know if I don't know the answer I will try to find out. I could also use some help in what questions I should be asking, what test results should I be aware of. I have learned the hard way you would think they would be telling you everything that your tests show but I had pneumonia once that showed up on a CT, and had been sick for a month, and had seen the doctor who preformed the CT and he didn't even say, your CT shows you have pneumonia, I will send a copy to your family doctor, you should follow up with them on that. Not a word was said. I know he was a GI but you would think after seeing me 3 times in a month and I was still as sick as I was when I first saw him, and it was evident enough for him to make a comment about me sounding awful, he would have gave me that information.
I am a 41 yr old female. I have been dealing with health issues now for going on 7 yrs. I will give as much detail as I can.
In 2004 I started having severe stomach pain, felt like it was right up under my right rib, the pain would go through to my back at times. I was also experiencing nausea and vomiting. I was also having diarrhea but the vomiting was way more bothersome at the time. After several trips to our family doctor where I was put in the care of the NP, I was finally scheduled for a ultra sound of my gall bladder. I did not make it to the scheduled test as I was awoke in the middle of the night with excruciating pain that sent me to the ER. They preformed the ultra sound and said I had gall stones, they referred me to a surgeon to have it removed.
With in 3 weeks of having my gall bladder removed I was sick again. Still vomiting but the diarrhea was getting worse. Several months later and several trips to the NP she decides to send me to a gastro doc for a scope of my stomach. Scope showed peptic ulcers and GERD. I was given meds for acid reflux, meds for anti nausea. This kept on for several more months with the diarrhea getting worse. Was sent back to gastro doc for scope of colon. He found a couple polyps which were removed. I was told I had Diverticulitis. We asked at that time was there any special diet I should follow and was told no, regular diet. I returned to gastro doc a few more times with no improvement. I was in the bathroom one evening experiencing severe stomach cramps and got light headed and passed out. I had been getting light headed for a while, while in the bathroom but had never passed out. I made another appointment with gastro doc, and was told "I'm not that concerned about that, I have a patient that passes out up to 9x a week" to myself I was thinking ok she may be use to it, but it scared the H out of me. I decided then I needed a new doc.
Move forward a few years later, I have been poked and prodded several more times and am beginning to feel like a lab rat. I have been told it could be dumping syndrome, then told it couldn't be that as I did not have surgery on my stomach itself so it could not be that. I had been told it could be something called a phantom gall bladder, not sure if that is something real or not, but just didn't sound right. I would say this is now 3 going on 4 yrs into this, I was completely frustrated. I had no diagnosis and was not getting any better. It was getting harder and harder to make it to work and when I did it was hard to stay. All these trips to the bathroom I was making I was developing a bad case of Hemorrhoids which were bleeding most of the time. I felt like I was passing razor blades during BM's and then it got to where I had the razor blade feeling all the time, I couldn't sit, stand or lay and be comfortable. I would go from the toilet to the tub. I gave up my job before I got fired (another long story). I had seen regular doctors, ER doctors and even 2 surgeons for what I was told was just hemorrhoids go home soak in a warm tub of water and use preparation H. Three years after that I finally find out it was all due to a fissure and several internal and external hemorrhoids. I had the surgery (worst pain I have ever had in my life).
4 years into all this I make another appointment with a new gastro doc. Go through the scope of both ends, CT scans, multiple blood and stool test and am told by this one, he doesn't know what it is and he is going to send me back to the family doc and if they want to send me somewhere else they can. I have just about give up by now, I figure I am just going to have to learn to live with all of this.
I drag myself to another gastro doc, once again scope both ends, blood work and CT scan. I am told that he believes it's IBS. I am given anti spasmodics and told that this diagnosis was a "garbage pale" diagnosis.
Now all through this me and my husband, who is a great support through all of this, are keeping diary after diary. Foods I would eat that would make it worse, stress factors, anything we could think of to try to maybe be able to control this, with no luck.
I gave up on doctors for a while again, it was just to hard to go in and be treated as if I was making all this up or exaggerating my symptoms.
With the food diaries we had no luck, I could eat something today and it not bother me at all, eat the same thing 2 days from now and just be tore up. So far the only thing we have been able to figure out by the diaries is that there are 3 weeks of the month this affects me the worst, the week before, the week of and the week after my period. As far as stress, if I said I had none that wouldn't be true. Everyone has stress, but I over many years and many trials have learned, what is going to happen will happen, all I can do is stay as calm as I can and try to get through whatever it is that is stressing me. Pretty much just give it to God and let him guide me. I have not found any relief from medications either. I have been given most of the meds prescribed for IBS and even low doses of anti depressants. Three times since all of this has started I have been given a steroid for 1 week, twice for headaches, and once for the swelling in my knee a few weeks before my scope of the knee. All three times while taking the steroid for 1 week, I would have almost no symptoms of anything. I was not woke up with a headache, I could eat what I wanted and seemed to go to the bathroom normally. I did have headaches but not daily, the first time I had 3 headaches the whole week, and only 2 episodes of diarrhea. I do not know what significance this had but it did seem to make some difference.
I will now list the symptoms I have (I will start at my head and go down) and any other diagnosis I have.
Headaches- I have these daily. I have seen dr.'s for them and am told I have migraine and tension headaches. I am woke up every morning by a headache.
Eye twitching- it seems to be more around my right eye but now can be anywhere, feet, legs, arms and I have even gotten them in the arches of my feet.
Swollen area on the right side of my neck, throat area. If you were to measure from the middle of my throat, it starts about 1/4" from there (middle) and goes up about 2" at a diagonal . When I am in the bathroom cramping and straining this area becomes more rounded and sticks out about 2"
Severe abdominal pain and cramping, bloating. Diarrhea that alternates with a feeling that I can go, I would not say constipation as it isn't hard stool. Just sometimes feels like everything is just swollen and wont come out. My stool when it is solid is never any bigger around than the size of a pencil.
Pain in the area most people call their tail bone. Feels like a spasm and throbs. Still have bouts with the hemorrhoids they do bleed but I also find blood in my stool, in the bowl and on the paper.
Joint pain. I have had a scope on my left knee but at times every joint in my body hurts. Diagnosed with osteoarthritis in left knee.
I have a rash all over my back that wont go away. At first I thought it was just acne, but this rash itches, it gets better but never goes away.
I have sweating spells, not like hot flashes. My face doesn't become flushed, and the sweats are cold clammy sweats all over. I don't even have to be doing anything to break out in them. When I am sweating, my hands and feet are ice cold.
Generally feel like crap, no energy, poor sleep, can be irritable and pretty much no sex drive.
My weight has been all over the place. In the beginning when all this started I was in a women's size 14 in the first few months after gall bladder surgery I went down to a size 10. I stayed that size for a few years. Then with in the last year I have put all that weight and added another 40 lbs to now be in a size 20. All of my weight gain is in my face, and mid section. The size 20 pants fit in the waist but are so loose in the legs. I have went from a Large top to a 2 sometimes 3x shirts.
With in the last 3 mos I have been having a dull pain on both sides of my back, feels like the start of a kidney infection. I have had kidney stones, the last one being 20 yrs ago. The pain comes and goes and doesn't get unbearable just dull.
My skin is much oiler, I usually have always had thick hair, but now it is thinning. With in the last 2 mos it was like I woke up and nothing fit, what fit yesterday doesn't fit today but I have only gained 1 lb. My feet, legs and hands all swell, my legs swell to the point you can leave dents in them. My face gets puffy. And feet swell to the point it feels like they will split when I step on them. I have awful pain that goes from my hip down to the bottom of my foot.
I have been tested for Cushings, Thyroid, carcinoids (I think thats what he called them) Lupus. I have been told that I have a small cyst in my left kidney, cyst on my left ovary. I have had an ultra sound for the kidney cyst and was told it was nothing to worry about, it was small and fluid filled. I was told that my last CT (about 1 mo ago) showed 2 masses on my right kidney but did not show up on the ultra sound. My CT also shows mild thickening. Other than this all my labs and test come back normal.
I have decided to see an internist instead of another GI. No one was looking past IBS for a cause and no treatment the GI was giving was working. I definitely feel more comfortable with the new doc. He believes my symptoms are as severe as I claim they are, he listens to what I have to say and doesn't just run in and out of the room in 5 min. When ordering test, he is cautious, not to just order them because they have them. He has said though he does not agree with the IBS diagnosis. I had asked if this could be hormonal related due to the weight, sweating, and worsening of symptoms around my periods. He didn't think it was hormonal but didn't dismiss it either, he said they had someone there in the office that I could consult with about hormones. I made the appointment and seen her. She too doesn't think its IBS nor does she think its hormonal. She thinks its all due to inflammation. She is wanting me to use AloeDophilus a probiotic and try another elimination diet. I have ordered the probiotic but a lot of the diet stuff I don't eat anyway. She thinks this inflammation is causing all of my symptoms.
My question are, if my digestive system is inflamed is this IBD instead of IBS?
Is the fact that I have mild wall thickening, seen on CT scans, evident of IBD?
Is it possible I can be this inflamed for 7 yrs?
Can I have IBD and all my blood work come back normal?
Is there a test that will tell if it is IBD? If so what tests will tell if it is or not.
Can I have IBD and it cause inflammation everywhere else? Like my arthritis? My headaches?
Has anyone with IBD used the probiotic mentioned and if so did they help? '
Anyone have any other idea what this could be? Could it all be inflammation or could it be more than one thing going on at once?
The internist suggested a consult with Cleavland Clinic. Any thoughts there? Or if it is IBD should I see about maybe consult with the GI guy in Chicago area I have seen mentioned in other posts?
What I do know: I know before my gall bladder attack, I was fairly healthy, I had headaches, as far as I knew. VERY outgoing and active, happy, content person. After gall bladder surgery, nightmare that I can't seem to wake up from. I have no energy, I go when I can, meaning depression is not stopping me from doing anything, what stops me is not knowing where we are going, how long we will be gone, will we be eating while we are out and if so where are the bathrooms or the quickest route home. I would love to go and do more, but I really don't want to be caught out in a public restroom and it just happen to be one of those times I end up passing out. I do stay home a lot, but I have lots of activities that keep me occupied and help me feel somewhat productive. Going out requires some planning sometimes but I do make every effort to do as much as I can. I know that I am not feeling or getting any better, it seems to just be getting worse, and the good days are fading.
I apologize again for the length of this post, I just feel the need to not leave anything out, never know it may be the one thing that may help me finally get an answer. I use to just wish someone would tell me what this was, now I just want them to get it right. If I haven't provided something that may help in someone giving advice please let me know if I don't know the answer I will try to find out. I could also use some help in what questions I should be asking, what test results should I be aware of. I have learned the hard way you would think they would be telling you everything that your tests show but I had pneumonia once that showed up on a CT, and had been sick for a month, and had seen the doctor who preformed the CT and he didn't even say, your CT shows you have pneumonia, I will send a copy to your family doctor, you should follow up with them on that. Not a word was said. I know he was a GI but you would think after seeing me 3 times in a month and I was still as sick as I was when I first saw him, and it was evident enough for him to make a comment about me sounding awful, he would have gave me that information.
