I am seeking some advice from those who have had crohns and additional issues that they were having trouble getting resloved.
Within a short time frame (2-3 months), I have found that I have crohn's disease, ulcers in my colon, continued colitis, hypoglycemia, Low B12 (210 with normal rang as 247-911), my gallbladder only has an ejection fraction of 25%, ileum shows opacification, thin amount of fluid in the endometrial canal, distended pelvic vessels feeding the uterus bilaterally (vericosity), ovarian cyst on my right ovary, hematuria (blood in urine constant since February of this year), recurrent urinary tract infections (Constant since February of this year), I have contracted C. Diff due to the fact that I kept getting antibiotics for my UTI's and such that were too strong apparently for someone with crohn's, I know of three ocassions where I passed kidney stones, I have bladder and colon spasms constantly, fibromyalgia, and possibly cluster migraines. I absolutly feel like crap all day every day, and this pain in my abdomin and right rib cage in my back and side as well as my belly button is killing me. The pain doesn't bother me as much as the mental aspect. I cannot think, I black out, I have dizzy spells, loose vision, sensitivity to light, and cannot function due to lack of mentally being where my body is physically located.
I have heard that with my B12 and gallbaldder problems, these are common symptoms. HOwever, I had to be for over 2 months for the B12 test and it took my mom asking before they would give it. Then instead of calling to let me know, my GI's office waited until I saw the doctor the next week, which was not a test follow up, but a regularly scheduled appointment, to tell me the results. Then instead of doing anything, even a temporary something until I could get in with my PCP, he told me that I had to call and get them to administer the shot... Which took another week. They didn't even fax the results to the doctor after I asked and they told me twice that they did. Thank goodness they work for the same hospital and I had it done at the hospital so that the doctor could pull the info off the system instead of me having to wait another 2 weeks for test results and an appointment. I keep getting told that I have anxiety and depression and that is what my problem is. However, I do not feel depressed or anxious, nor do I have anxiety attacks, my breathing issue at random was due to the B12 low. I do not get upset or down. Frustrated with the doctors, yes I do because I am missing work just for them to not test and to put me off. I have a life to live too you know. The issues make it hard enough, why do they feel they need to make it harder?
I now have a neurologist, urologist, PCP, GI, OBGYN, and an oncologist (just yearly with him b/c breast cancer runs in my family and I am fibroscystic). However, I am still not getting anywhere, and when the tests show problems, they just get shoved aside, and more medicine is added to my list. I just added vallum and some other thing I can't rember today alone. I also learned that they put me on apriso for the cronh's to keep the colitis maintained. The problem with that is that they never got it down to begin with. How can you maintain something that was never resoloved? I still bleed everytime I use the rest room, but because I am not having diarrehea or a fever of 101, it is not considered a problem. I run a fever every day that starts at 98.9 and works it's way to 99.9 and back again. It fluctuates all day, and I get cold chills on and off.
As far as my gallbladder test goes, I had that done 2 weeks ago, and requested for it from OB because he took one look at me and wanted to know what he could do to help because I just looked like I felt like crap. I explained everything, and he ordered quite a few tests. The lupus and another test I can't remember were negative, but the HIDA scan and intravaginal ultrasound showed abnormalities.
My GI did not want to look further because he thinks removing my uterus will solve the problems, but that is a big deal, and the one who knows all about uteruses says that the he has seen way worse, and removing my gallbladder should make me feel 10 times better, but he wants the GI to make that call since it is more his speciality. Now that I have the test, he will have to look, hopefully. THis weird metallic taste in my mouth is killing my taste buds, and I cannot eat due to the pain, constant spasms, and 24 hour long nausea...
I faxed it as soon as I got the results and called the nurse to let her know, and she said, "Just bring it when you come in two weeks." If removing my gallbladder will make me feel better, please do so! I have had a B12 shot for 7 business days straight, and I am not feeling any better at all. So if it is B12 low and gallbladder together, please take it! I am desperate, and I can't seem to get any relief or help from anyone. My attitude is not that of poor pitful me, because there are many people out there that are way worse off as me, and I still get to work, school, and take care of my child. It is very hard to keep up and very energy draining, but until they do something, I still have to live my life. I have always pushed myself to the limits and that is all I have known how to do.
My pain in my right rib cage, side and lower abdomen is now constant and not just coming and going anymore. I can't sleep because it hurts so bad, and I do not want to take pain medicine because I will have issues waking up. I itch all night long, which I believe is a reaction to one of the 10,000 meds they have me on that are not making life any better. I am having trouble urinating, and have to squeeze it out now as well. I keep all of them up to date with my meds list, I carry it around with me so that they all have it. Surely if something didn't mix they woudl catch that??? Also, since my urologist is making me take antibiotics every night, i believe they have messed up my birth control shot, which is what keeps me from getting ovarian cysts. So now, I have an ovarian cyst and haven't had a menstral cycle since June of this year.
So has anyone else had all this happen at once and not getting any help or relief? If so, how did you resolve it? I really just want to go to the Emergency room with my HIDA scan results and beg them to please remove it because I am hurting so bad, this taste is disgusting, I feel like I have the flu and this nausea is unbareable. I know that if I go there, they will rule a UTI ignore what tests I give them and send me home. Therefore, it is a waste of my time as it has been each and everytime I have been there. I thought doctors were supposed to be caring and want you to feel better. It isn't that anything is made up, I have the test results to prove it. I understand that they get mad at me because I keep proving them wrong when they get the tests, but I cannot sit back and wait. Afterall, even my crohn's meds when they saw the active colitis and ulcers were not the type to heal anything, but to maintain something. I do not want to maintain all this inflammation. Last question, could it possibly be something else that is causing all of this to happen at once? How can one body just go crazy like this in a short time frame? Also, I have buldging disc in my L4, L5 and S1 with bones spurs that I have had for awhile. I got my shots back in 2011, so I rule out menegitis from them
... Can a bone spur get loose, or the disc push on something, causing neuropathy that is making my brain send signals to my body that create these problems? As you see I am desperate for some answer and to get somewhere anywhere, but continuing to get worse while these doctors keep adding all this dang medication....
Thanks for reading this
Ashley
My current meds are (It seem a lot too much in my opinion):
1. Adderall 30mg once daily (only thing that gives me a few hours of concentration)
2. Depo-vera shot (BC) once every 3 months
3. Fish Oil with omega 3 (For hypglycemia because I don't like fish)
4. Multivitamin with Omega 3 and DHA (I cannot get nutrients and I'm tired of my hair falling out, so I needed to try something - did this on my own, no help with diet or vitamins even with the hypoglycemia and crohn's diagnosis)
5. Phenagran (PRN- which I do not take unless I am on my death bed because it is a narcotic and I hate the way they make me feel)
6. Hyomax (1 every 12 hours for colon spasms)
7. Veslcare (one a day for bladder spasms)
8. demerol (PRN - only take when I am on my death bed because once again a narcotic and I hate the way they make me feel)
9. doxycyline (For the continuation of white blood cells inurine and hematuria)
10. apriso (4 a day for "Maintenance" of the colon)
11. phillips colon health (Probiotic, one a day to keep me from getting C.Diff again)
12. Budesonide (steriod to get the inflammation down - not working by the way)
13. B12 injections
14. Valuum (haven't filled, don't really want to)
15. Some other medication given by my neurologist (not filled yet and prescription is in the car so I can't remember)
Within a short time frame (2-3 months), I have found that I have crohn's disease, ulcers in my colon, continued colitis, hypoglycemia, Low B12 (210 with normal rang as 247-911), my gallbladder only has an ejection fraction of 25%, ileum shows opacification, thin amount of fluid in the endometrial canal, distended pelvic vessels feeding the uterus bilaterally (vericosity), ovarian cyst on my right ovary, hematuria (blood in urine constant since February of this year), recurrent urinary tract infections (Constant since February of this year), I have contracted C. Diff due to the fact that I kept getting antibiotics for my UTI's and such that were too strong apparently for someone with crohn's, I know of three ocassions where I passed kidney stones, I have bladder and colon spasms constantly, fibromyalgia, and possibly cluster migraines. I absolutly feel like crap all day every day, and this pain in my abdomin and right rib cage in my back and side as well as my belly button is killing me. The pain doesn't bother me as much as the mental aspect. I cannot think, I black out, I have dizzy spells, loose vision, sensitivity to light, and cannot function due to lack of mentally being where my body is physically located.
I have heard that with my B12 and gallbaldder problems, these are common symptoms. HOwever, I had to be for over 2 months for the B12 test and it took my mom asking before they would give it. Then instead of calling to let me know, my GI's office waited until I saw the doctor the next week, which was not a test follow up, but a regularly scheduled appointment, to tell me the results. Then instead of doing anything, even a temporary something until I could get in with my PCP, he told me that I had to call and get them to administer the shot... Which took another week. They didn't even fax the results to the doctor after I asked and they told me twice that they did. Thank goodness they work for the same hospital and I had it done at the hospital so that the doctor could pull the info off the system instead of me having to wait another 2 weeks for test results and an appointment. I keep getting told that I have anxiety and depression and that is what my problem is. However, I do not feel depressed or anxious, nor do I have anxiety attacks, my breathing issue at random was due to the B12 low. I do not get upset or down. Frustrated with the doctors, yes I do because I am missing work just for them to not test and to put me off. I have a life to live too you know. The issues make it hard enough, why do they feel they need to make it harder?
I now have a neurologist, urologist, PCP, GI, OBGYN, and an oncologist (just yearly with him b/c breast cancer runs in my family and I am fibroscystic). However, I am still not getting anywhere, and when the tests show problems, they just get shoved aside, and more medicine is added to my list. I just added vallum and some other thing I can't rember today alone. I also learned that they put me on apriso for the cronh's to keep the colitis maintained. The problem with that is that they never got it down to begin with. How can you maintain something that was never resoloved? I still bleed everytime I use the rest room, but because I am not having diarrehea or a fever of 101, it is not considered a problem. I run a fever every day that starts at 98.9 and works it's way to 99.9 and back again. It fluctuates all day, and I get cold chills on and off.
As far as my gallbladder test goes, I had that done 2 weeks ago, and requested for it from OB because he took one look at me and wanted to know what he could do to help because I just looked like I felt like crap. I explained everything, and he ordered quite a few tests. The lupus and another test I can't remember were negative, but the HIDA scan and intravaginal ultrasound showed abnormalities.
My GI did not want to look further because he thinks removing my uterus will solve the problems, but that is a big deal, and the one who knows all about uteruses says that the he has seen way worse, and removing my gallbladder should make me feel 10 times better, but he wants the GI to make that call since it is more his speciality. Now that I have the test, he will have to look, hopefully. THis weird metallic taste in my mouth is killing my taste buds, and I cannot eat due to the pain, constant spasms, and 24 hour long nausea...
I faxed it as soon as I got the results and called the nurse to let her know, and she said, "Just bring it when you come in two weeks." If removing my gallbladder will make me feel better, please do so! I have had a B12 shot for 7 business days straight, and I am not feeling any better at all. So if it is B12 low and gallbladder together, please take it! I am desperate, and I can't seem to get any relief or help from anyone. My attitude is not that of poor pitful me, because there are many people out there that are way worse off as me, and I still get to work, school, and take care of my child. It is very hard to keep up and very energy draining, but until they do something, I still have to live my life. I have always pushed myself to the limits and that is all I have known how to do.
My pain in my right rib cage, side and lower abdomen is now constant and not just coming and going anymore. I can't sleep because it hurts so bad, and I do not want to take pain medicine because I will have issues waking up. I itch all night long, which I believe is a reaction to one of the 10,000 meds they have me on that are not making life any better. I am having trouble urinating, and have to squeeze it out now as well. I keep all of them up to date with my meds list, I carry it around with me so that they all have it. Surely if something didn't mix they woudl catch that??? Also, since my urologist is making me take antibiotics every night, i believe they have messed up my birth control shot, which is what keeps me from getting ovarian cysts. So now, I have an ovarian cyst and haven't had a menstral cycle since June of this year.
So has anyone else had all this happen at once and not getting any help or relief? If so, how did you resolve it? I really just want to go to the Emergency room with my HIDA scan results and beg them to please remove it because I am hurting so bad, this taste is disgusting, I feel like I have the flu and this nausea is unbareable. I know that if I go there, they will rule a UTI ignore what tests I give them and send me home. Therefore, it is a waste of my time as it has been each and everytime I have been there. I thought doctors were supposed to be caring and want you to feel better. It isn't that anything is made up, I have the test results to prove it. I understand that they get mad at me because I keep proving them wrong when they get the tests, but I cannot sit back and wait. Afterall, even my crohn's meds when they saw the active colitis and ulcers were not the type to heal anything, but to maintain something. I do not want to maintain all this inflammation. Last question, could it possibly be something else that is causing all of this to happen at once? How can one body just go crazy like this in a short time frame? Also, I have buldging disc in my L4, L5 and S1 with bones spurs that I have had for awhile. I got my shots back in 2011, so I rule out menegitis from them
... Can a bone spur get loose, or the disc push on something, causing neuropathy that is making my brain send signals to my body that create these problems? As you see I am desperate for some answer and to get somewhere anywhere, but continuing to get worse while these doctors keep adding all this dang medication.... Thanks for reading this
Ashley
My current meds are (It seem a lot too much in my opinion):
1. Adderall 30mg once daily (only thing that gives me a few hours of concentration)
2. Depo-vera shot (BC) once every 3 months
3. Fish Oil with omega 3 (For hypglycemia because I don't like fish)
4. Multivitamin with Omega 3 and DHA (I cannot get nutrients and I'm tired of my hair falling out, so I needed to try something - did this on my own, no help with diet or vitamins even with the hypoglycemia and crohn's diagnosis)
5. Phenagran (PRN- which I do not take unless I am on my death bed because it is a narcotic and I hate the way they make me feel)
6. Hyomax (1 every 12 hours for colon spasms)
7. Veslcare (one a day for bladder spasms)
8. demerol (PRN - only take when I am on my death bed because once again a narcotic and I hate the way they make me feel)
9. doxycyline (For the continuation of white blood cells inurine and hematuria)
10. apriso (4 a day for "Maintenance" of the colon)
11. phillips colon health (Probiotic, one a day to keep me from getting C.Diff again)
12. Budesonide (steriod to get the inflammation down - not working by the way)
13. B12 injections
14. Valuum (haven't filled, don't really want to)
15. Some other medication given by my neurologist (not filled yet and prescription is in the car so I can't remember)
