Why don't the doctor's listen

[ashleyf8]

My name is Ashley and I am 27 years old. My whole life I have numerous issues with my female organs, so anytime I had stomache pain, they blamed it on possible cysts without even looking. I recently went through a divorce, while trying to work and go to school half time in the MBA program. Since all of this started, I have had severe stomache pain, so I see stress really did a toll on my body... There is no tellling how long I have had Crohn's and just didn't know. I got severly ill my Senior year of college.. It was awful.. The athletic doctor said that from my symptoms, I had stomache ulcers and needed to stop trying to overdue it. I kind of just shrugged it off because he didn't investigate or send me anywhere to test this theory. For the past year and half, I have had the most severe stomache pain, I went to the doctors and the emergency room several times.

My record for the emergency room pretty much says, Ignore this one because she is a constantly bothering us for no reason... After being diagnosed with PID because they saw inflammation on a CT scan, the put me on antibiotics... I was not getting any better, it just kept getting worse. So I begged my OBGYN to go in and make sure that my female organs were fine because I wasn't feeling better. He finally agreed, and guess who didn't have PID.. I thought it was impossible, but you tend to want to trust your doctors... I am irate that they ignored me all this time, like i was faking it or something... He then sent me to a GI doctor who did a coloscopy and endoscopy... They found one pollup, inflammation in my Digestive system, and ulcers in my colon. He went ahead and did multiple biopsies to test for different things... The labs came back about a month later, and I tested positive for Crohn's disease... Even though it sucked, it was happy to find the problem definilty.. and very happy to laugh in all those people who didn't listen me faces. However, it is like they still are not listening to me...

I went to the ER because I was bleeding after my coloscopy/endoscopy.. it was huge clots of blood, I felt like I was in back labor (I have been there before, so I know what it feels like for sure), my stomache was contracting and everytime it contracted I pushed out old blood (the clots) I knew it was old blood because the color was so dark coming out, but when it hit and spread, it was more of a red color... I called the GI doctor's oncall because i was concerened.. They told me it wasn't GI since it was the other end, but that wasn't correct and I needed to go to the ER. When I got there, they totally ignored me.. There was no more blood coming out, I guess it was that one time ordeal, but my stomache was still contracting and i was in immense pain.. The ER Doctor told me it was probably just a period and wanted to give me a hormone shot as well as a shot of torodal... I have a high pain tolerance so if I am doubled over, it hurts really really bad.... All the toradol did was make my butt hurt in the injection site. I just went to make sure I wasn't bleeding internally, and they didn't even check for that... I wasted my time and my money..

I had to go back a month later because I was so lathargic that my mom was worried I was dying.. My color was completely gone and I was in and out of consciousness... I ended up having a severe UTI.. The kicker is that the paperwork from the previous visit when he said i probably just had a period showed the UTI and they didn't tell me or put me on any antibiotics.. So that is what caused the passing out... UTI's can kill you.. why woudl and ER Doctor overlook that???? I still feel like I am going to pass out all the time.. When I am clear of UTI's and just have minimal pain, I run fevers between 99.3 and 99.9 all day everyday.. But when I do have an infection, UTI, I do not run fevers at all and my body temp drops to like 96.5 to 97... My blood pressure is always fine.. I am hypoglycemic as well, and I am having trouble eating because my entire stomache and back is in constant contraction mode... So the loopiness could be the fact that i cannot eat with the Crohn's in full flare....I got to the point where I couldn't breathe yesterday adn I am still weezing.. MY lower back on both sides feels like I was hit by a bus and there is pressure in both my upper back and lower back on both sides to the point that I feel like I would feel better if I could stab my back and release pressure (I know that wouldn't work and I am not crazy).... Since I couldn't breathe and I was hurting so bad I went to the ER again yesterday to make sure I didn't have any inflammation going to my lungs... As soon as I got there, they did an EKG, a blood sample and a urine sample.

I sat in the waiting room not breathing correctly for 4 more hours as I watched everyone else who didn't even look sick go back before me.... The doctor came in before the nurse even got in there and said, your blood work looks good, you have White blood cells in your pee, here is a perscription.. and you are having an anxiety attack.. I am pretty sure I know what an anxiety attack is, and that wasn't one. I still am having trouble breathing and it still hurts to take in breathes in my chest and back... THey couldn't wait to get me out.. I had to beg for a chest X-RAY, and I am having to rely on in home pain medicine just to stay out of fetal position. I am a single mother who has a child to take care of and really needs my job. This is affecting my life and I fear loosing out on good times with my baby as well as failing school, and loosing my job, not being able to support my family... I haven't even been given any type of diet nor was one discussed with Crohn's.. I am scared to eat and my belly is too full to eat, but yet I am not getting any advice...

Also, Do i have to stay on antibiotics the rest of my life in order to keep UTI's away???? I didn't have one earlier this week when I went to my physcian, but i have one again now... My whole body starts spasming when I get these.. Could it be more than a UTI??? If so, why don't they check??? Does your WBC In bloodwork have to be high before they make sure it isn't a bigger issue with your kidneys or blatter?? Could a gallbladder cause any of this??? I just think it is weird that I got diagnosed with Vericose veins, crohn's and hypoglycemia all at the same time!!!!!! Could there be a bigger issue that caused all of this to show up at once??? My physcian thinks that it is my Uterus, my OBGYN thinks it is just the Crohn's, and my GI says it is all urinary... I am sick and tired of this never ending loop :ymad:.. What do I have to do to get some relief??? What is it going to take??? Nobody is doing anything to help me with this condition or to relieve my pain?? I was placed on Apriso and I know that it might take a minute to find the right medicine, but when I call my GI's office, the nurse says "you probably have a UTI and there isn't anything GI Related":ybatty:

IN my opinion, the Crohn's is causing the UTI's since nobody will check my other organs... So the meds aren't working, making it GI related... I never had any issues until all of this stuff started coming out.. So you cannot tell me it isn't a little to do with the GI... Please anybody, advice, help assistance.. I need relief or at least a doctor to listen to me.. My family just says I am annoying them when I want to vent... The doctor's aren't helping me even thought they found that there is a problem.. and i have zero emotional support, I am drowning in physical pain and it is taking a toll on me mentally :sign0085:

 

[David]

Hi Ashley and welcome to the community. Your frustration is understandable I'm so sorry you're having to go through all of this. Questions:

1. When was the last time you had a CT Scan? Have they evaluated you to see if you have a fistula tunneling to your bladder? That can cause recurring UTIs.

2. Is the only medication you're on Apriso? If you're on others, which?

3. Have you had your vitamin and mineral levels tested? Stuff like vitamin b12, vitamin D, magnesium, etc.

4. Other than your WBC, are any other blood tests off?

We're here for you.

*hugs*

 

[ashleyf8]

My last CT Scan was last week, and it was on the lower abdomen because my physcian took a step backward because it really hurts to go through those types of exams.. My physcial was an OB back in the day, so he likes to still play OB every now and again... The inflammation he saw was what concerned him, but I already told him, it woudl show inflammation because I have been down that road.. I would have understood if he scheduled it on my stomache part.. My OB was not concerned with the vericose veins on my uterus, but I think it is time to find a new OB because he also said I didn't have endometriosis, but showed me a picture and said, here is your endometriosis that I burned off.. So I really don't think he did anything about that part to be honest.. I have had a three hour sugar test, which was where they found the hypoglycemia, but I really need a hemotologist because I have gotten to where I have zero faith in my doctors... If Fistula tunneling is found in your pee, then I hope so.. If it isn't and it is a different kind of test, then no I have not been tested... They just keep putting me on antibiotics which is a problme.. I have already gotten C.Diff once from the antibiotics and I don't want it again...THey are not going to the source of the problem, so my mom is talking with her urologist to get me in so someone will actually look at these organs... You can't keep getting them for no reason what so ever... As far as blood tests go, they only do the basics, white blood, red blood, heomglobin, glucose, ect... THey do not go any further because my WBC count is normal in my blood, they only find the WBC issues in my pee.. If they tested for something else in my pee, they sure don't tell me.. However, if you compare the blood work, my WBC count changes drastically... I had two blood tests in two weeks, my WBC count was 7.4 one week then the very next week it was 5.2... Is it normal for your WBC to vary like that.. It goes up and down, up and down... I have had about 100 of the same blood tests alone this year, whcih includes STD testing because being 27 single, skinny, and tattooed, they assume that I am a drug seeker or a whore (excuse me for using that but I couldn't find a better word)... However, I one am too busy for that, and do not even date, and two even if I wanted to do that, I can't because I am in too much pain.. I can't even go through a yearly OB exam without breaking down into tears...THe meds I take are just the apriso for the Crohn's, Phillips probiotic for immune system and digestive system health, I am on adderall for my A.D.D because without it, I do have panic attacks (which is why I know the diff b/w a panic attack and something being wrong when I can't breathe)... Those are the three meds I take everyday.. I am currently on Cipro for the UTI and what I like to call a perscription Azo.. I really need my doctor to discuss vitamins and stuff with me, because I am not getting what I need for hypoglycemia or Crohn's, and I am extermely malnurtied... My hair is falling out in chunks and I am too young to be bald... I asked for a viatmin deficincy test, especially since my mom lacks B12, but unles it is on the standard blood test, they do not test me for it.. If you do my blood work and BMI testing.. I am 100% perfectly healthy, but so was my grandmother when her gallbladder acted up, and it wasn't until she ended up with gangrene and passed out in the floor before they looked. My great grandmother was the same everytime she went tot he doctor and ended up having ovarian cancer for 20 years and it wasn't until it creeped to her lungs and killed her in a week before they realized she had cancer... My family has history with Diabetes, high blood pressure, epilepsy, and all sorts of cancers (breast, colon, ovarian, uterin, lymphoma and non-hodgkins Lymphoma)... but yet they do not do any types of tests because my blood work comes back good.. Trust me I will happy to not have any of those other things, but at the same time, it scares me that it feels like my body is shutting down organ by organ and nobody takes me seriously... I have to beg for investigation before they will do anything... I shouldn't have had to beg for surgery to find out why I hurt so bad, I shouldn't have had to beg for them to do a chest xray at the ER when I couldn't breathe (which by the way, the doctor didn't even show me, just said it looks good, so bye - I don't think he even looked at it)... He actually told me to be quiet when I was trying to give him my symptoms; that is how much he wanted me out of there...I am bleeding again, with my stomache contractions, but I am sure they will just say it is a period, which I know the difference because I have had one for 16 years now, but the ER is a waste of time, and so is calling the doctors office. I am trying to get in with an internal medicine doctor who specializes all around and can get my doctors communicating, or at least refer me to ones in her group so that I can get past point A.... I shouldn't have to beg to get assistance with a diet, I shouldn't have to beg to have vitamin blood tests ran (which they didn't get into the specifics, just the basics)... I don't want to live on pain meds, I don't like taking them period, but I have on reserve, Demoral that I take on an as needed basis, which I have to be in severe server pain, and will only take them when I am at home.. and Phenegran for the nausea, on as needed basis... It is just that they don't feel what I feel with my body, and if they did, they would understand.. but something is not right and I am shutting down both physically and mentally...

 

[Ckt]

I so understand your frustration and hear you loud and clear!is there any possibility of going to another er?is there another gi doctor to can consult?because I have been misdiagnosed and not treated appropriately so much..and I'm a nurse so I understand the system well..I just refuse to stop until I get heard and treated!
I was going to one er in town and they began treating me the same that you have been treated..completely blown off. Over and over again..lectures on chronic pain(even when I told them the pain was different), not going to get narcotics(even when I told them I didn't want any but wanted to treat THE PROBLEM CAUSING THE FLIPPING PAIN!!),and booted out..my labs are always always normal..last night,I went to another er and what do you know?i have a new duodenal ulcer(crohns related or just a garden variety ulcer who knows?),thickening and scarring in my terminal ileum as I do..oh!and enlarged lymph nodes in my right abdomen and groin causing some major pain!i dont know whether to take my biologic or hold it!probably the lymph nodes are crohns related and not the rare side effect of lymphoma of the biologics I have taken!anyways..they treated me appropriately for the most part and were extremely kind and respectful. Even so..I may have to go back today or tomorrow to beg to be admitted to receive some Iv steroids, fluids,pain meds,just to get me through until Wednesday when I travel to Chicago for a consult in an IBD clinic. It's where I was originally diagnosed.
My advice to you?channel your anger and frustration into seeking proper care anywhere you can go..are you near Vanderbilt?they are supposed to be really good..
Check out the docTor review forum. You may find a doctor fairly nearby who is attentive to your needs..
Btw..your WBC fluctuation is wnl..normal WBC is 5-10..I know the frustration when it doesn't show up waving s banner!mine has at times(ruptured appendix) but usually it takes a pretty smart doctor to find it and treat it well..
I didn't mean to go on and on about myself but I just wanted to show you that you aren't alone in the battle to get good and appropriate treatment . Continue being your own advocate and basically feck them if they judge you on your tatts,appearance..I give you my word there are fantastic health care people out there who won't give a big rats ass what you look like!!Btw..I have tattooes and I'm a nurse!
I live in ky..pm me anytime..here they just passed a huge bill in legislature severely restricting doctors in prescription drugs. They keep track of er visits and how many you go to..you may be experiencing some of that too!Because so many have abused the system in ky, the laws became stricter and they are just letting the pendelum swing from being lax to being severely restrictive..but their licenses are on the line now and many have died here due to drug ods.
Sending you loads of positive energy!!:kiss:

 

[RMS]

My doctors all told me that UTI can be caused by Crohn's and when I was in hospital I was always having tests to check I hadn't contracted one! With my family GP, I definitely got the impression that he thought I was making a mountain out of a molehill and the multiple times I visited A&E, I was told it was all stress related. It took weighing around 84 pounds for anyone to finally take proper notice. I think for women, it's harder to prove that something isn't right because doctors all seem to go to period pain, instead of listening. I hope you finally get the help you need, just make a lot of noise about it. Your health is most important and if you keep looking for help, you WILL find it! The staff who took care of me during my month in hospital were so caring, they were wonderful! Don't feel disheartened by your bad experiences and don't feel like you are wrong about how YOU feel. xx

 

[Pointy_ears]

I had similar problems with Crohn's and uti's and I couldn't find a single consultant willing to take responsibility for my care! I know how distressing and worrying it can be but eventually an underlying cause will be found and you will get treated!

 

[ashleyf8]

THanks for the encouragement.. it is much needed because today is not a good one at all. I am experiencing higher than normal sharp pains, and I kind of look like a ghost.. it is taking all i have to type this, but hopefully i can pull some quick advice from somebody.. Really gross where I am about to go.. I have been having rectal bleeding alot more than ususally. It usually happens with a bowel movement once a week and then just stops, but it has been going on since yesterday, not just in my bowel movements. I am dripping blood.. My anus is acting as if it is on its period.. And when the bowel movements do take place, It looks like sombody was murdered in my toilet. I do know for sure that is where it is coming from. I haven't even had a period since June.. I don't know why, i just haven't... For you girls that know.. As the pain has increased and my light headness has gotten worse, the weird taste in my mouth is now more intense and i had what looked to be pre-period come out of the vaginal area. Then it just stopped but the rectal bleeding continued. So now, I am wondering if my cramps intensified because maybe I might be about to have a period, or if my body is just having a weird reaction. My Gi's nurse said that if the pain worsens and the blood remains the dark reddish brown/purple color, and i have a fever of 102 to go to the ER. All of that is true, except my temperature is only 99.6.. I have felt really bad for a long time, but this feels different, and I have never continued rectal bleeding outside a bowel movement. SHe said that i Might be having a crohn's flare up, but the pain has not ceased since day one, so if that wasn't a crohn's flare up why did I hurt so dang bad? I am so confused right now... and I don't want to go to the ER b/c they just write me off, but I am really terrified right now. I do have an appointment at 2:00pm tomorrow with the nurse practicioner, but I am afraid of waiting too long.. Advice from someone who has had this happen.. what is the best thing to do right now... B/c of the lack of fever it apparently isn't an emergent problem according to the nurse, and I know if I go to the ER, they will probably just tell me I am having a period and just think it is on the other end, or that it is just a hemmroid, and I am not sitting around for 12 hours just for that.. THey will also tell me I have a UTI... I saw the urologist today, I do have white blood cells, there is an infection, but every culture says it isn't a UTI... I do have blood in my urine which is also being cultured. I know I have bladder spasms, so I have to have a cystoscopy, but to me that doesn't have anything to do with the continuation of rectal bleeding and the change of my pain level, along with the sudden onset of dizziness... I mean, I am not an MD so I don't know, but I do know I keep getting the same responses over and over again, but everytime I check and they do something, it gets worse, not better.