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Hi. I am new to this board and if anyone could help or has any opinions that would be great. I got very sick in Feb 11 I was losing weight rapidly and had constant rectal pressure and very tired. My pcp kept insisting that I had C-diff and mono. I am a nurse and I had been taking care of a pt that had C-diff. Even though my c-diff came back negative six times he still persisted that was the problem. By May I had lost thirty two pounds and was going to the bathroom twenty to thirty times a day. I could not stay hydrated and could not take the pain anymore. I was admitted I had a endo and colonoscopy I was told that I had Crohns Disease. I failed first line treatment therapy Asacol, Pentasa. Had a small bowel series in June new discovery a mass on my right ovary and a endocervical tumor was not on CT in May. Had a emergency hysterectomy. Was re-admitted back to the hospital in Aug for left upper quadrant pain and lower quadrant pain with black stools and again twenty to thirty a day. Was told I had a UTI and a flare up was started on Remicade. Tried Remicade until December severe fatigue, fever, sick all the time, tremors. Still going to the bathroom non-stop no weight gain. Was switched to Humira same issues with Remicade no energy, no weight gain, tremors, and severe headache. My pcp decided to start me on Marinol because I am down to 98lbs. Was re-admitted last week and spent a week in the ICU because my body could not take the Marinol. Not only was I going to the bathroom non stop and I was now vomitting. Was re-scoped GI doctor does not have any idea what is going on in fact I got my records and out of eight biopsies both from last year and this year none positive for Crohns Disease. Negative for celicac sprue both times. So she has put me, my family, and career through a living nightmare for nothing? Not to mention my mental health. Since this has began I have been put on lexapro, lamictal, trazadone, clonazepam. This last time I was admitted they hospitalist just decided to take me off all those medications to "wash my system out." Almost everybody and anybody knows you do not just take someone off those types of medications. I was treated like I needed to be put in a insane asylum or go to treatment. As a nurse I can not believe I let these people treat me like this. I am not crazy I am in constant pain and whatever is going on with me I deserve to have a correct diagnosis. I have a apt with Dr. Russell I Heigh on July 31. I am scared to death but at the same time I can see a light at the end of the tunnel. I know he does not have some fairy dust that he can shake on me and make me Nicole again. I need to be realistic. I might not hear something I want to hear. Does anybody here on this board have any experience with this doctor? I had to go and be evaulated by a treatment program last week. The only honest and kind Dr I have found along this awful journey simply stated "you do not need to be in treatment you need a proper diagnosis who would not be depressed." I am tired of being treated like this is all in my head and yes I do smoke. I am trying everything and anything to stop before I get to this apt because I do not want to be look down upon and I do not want to be told it is in my head. Is this Dr. going to treat me like I have been treated for the last year and a half?
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even though our symptoms are different i feel for you. im now 98 pounds and have gotten no diagnosis except ibs or my favorite "its all in your head." to that i say fuck them all. they have no idea what its like to struggle like this to survive. im starting to break down emotionally now. its so hard to function this mal nourished and i pray that you as well as me finds someone that caan correctly diagnose. im getting a series of more tests done this week. i will be swallowing a camera so that they may see my small intestines since the colonoscopy and endoscopy done last year were negative.
Oh You Poor Dear One! First Unfortunately I do not know the Dr you are going to see But I will pray for you. My heart goes out to you and all that you have gone thru. I have been going thru some things over the past 3 years, just under much different circumstances. None the less, I do believe that there are Drs out there that do care and will not stop until the correct diagnosis is made. Unfortunately, there are others that are either stuck in their ways of thinking,or ones being influenced by the perks from Big Pharma to utilize what they want them to perscribe or what tests or procedures they are to use. I have always heard that Mayo is the most remarkable Life saving Hospitals, When others do not have the answers, This is were you will find them. Also others that have been told there was no hope, Mayo found a way to bring Hope. SO We have to push thru, not let anyone be little us and tell us it is in our heads, If the symptoms are there it astonishes me how they can be denied grrrr, I am looking up and reading up on every symptom I have, asking as many questions that I can,I write them down even before I see the dr so they can be answered.I pray that some DRs will read this and think about things from a patients point of view, I hope everything gets better & you find your answers and get the best of health again. (((((HUGS)))))) from one that understands.
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1 ReactionThank you for the reply. Nice to know that I am not the only one out there. I had a complete break down today. I can go from being angry to crying in about two seconds. Being malnoursihed can play tricks on your emotions because everything is out of whack. I know that and I am sure you do to but when your having a breakdown it does not make it feel any better. No they have have never walked a day in your shoes or mine. I actually had a RN tell me "I know how you feel the birth control was posioning me for six months." My reply to that was simply looking at her like she was the stupidest person I have ever met and she better be glad I was on alot of pain medication. I would never tell one of my patients that EVER! I do alot of praying it is the only way I could have gotten through this week. I will keep you in my thoughts and prayers this week. Never give up on yourself you are your own best advocate. I think that is what I am having done when I get to the clinic in AZ on the 31st. Again thank you for replying I feel kind of lost. I have loss people that I thought were friends because I can't do anything and they do not understand what it is like to somedays you simply do not even care about getting up to brush your teeth. They are not good for me anyways one of them had the nerve to ask me if I had anorexia and another told me I looked like a holocaust survivor. So again stay strong, be your own advocate, and never walk away again thinking that it is in your head.
omg i have had drs ask me if i have an eating disorder. its like "yes you dumbfucks,i have an eating disorder. thats why im in your office begging to help me find a way to gain weight." dont anorexic people generally not want others to know about there suffering.lol it does feel nice to know another knows your pain. i went to church today and started crying. i feel like no one understands. and i have my faith in the lord but am getting so sick that at times i wish id pass away. but i have four kids and they are the only reason im attempting to carry on. they mean more to me then anyhting in the world but at times i feel like a failure of a mother for being so sick. my eldest who is ten lost her father to cancer when she was five and he was 27. i also have a five year old girl and identical twin boys that are a year. there dad is an addict that is always recovering then fucking up which only causes more misory to my world. hes staying here to help my since im so ill but i finally got the guts to put an end to the relationship last month. anyone willing to take advantage of a sick person, well i dont know what to think about it. i hardly have any friends and my three that have stuck by me live in norway, chicago, and wisconsen so i am feeling so alone at times it hurts to breathe.
I made the mistake of speaking my mind about no longer wanting to live during my last hospitalization. Not that they did anything about except treat me like I was the crazy girl in room #6. The only thing that keeps me going is my son he is nine. Some days I feel guilty about that. Of course he has no idea that I feel that way but if he did I would feel horrible. Then I feel like a horrible mother it is summer and all he has got to do is watch his mother be sick or in the hospital. Dr's do not seem to get that when you live your life on the toilet or in bed after eating that yeah you really do not want to eat who would.
DOES NOT make you an anorexic. My cousin is anorexic or was (they do not normally just throw it out there). You probably needed to get the addict out of your life he probably really not helping you but probably hurting you in the long run. But when you feel alone sometimes you do not care who it there just somebody. When it hurts to breathe remember your kids, friends and God. Be Strong and I am always here. Although I am in KS. I am so glad I posted on here today it is a great way to end my day I did not want to because I feel like everytime I share my story people think I am crazy. By the way, if I went to church I would do the same thing. Sit there and cry. Its hard to not be hard on yourself in this kind of situation but take a step back and know that a answer will be coming soon:)
Thank you for the prayers. Thank you for the "push me thru" I needed that today. I am sorry you have been struggling with things for three years. I hope that you do have a correct diagnosis and are on the road to recovery. I also write down my questions but it is always like they do not have time or they go around the question. They like to intimidate people which I do not tolerate well. Which upsets me even more. They are still influenced by the perks of Big Pharma even though they publicize they are not. I know I am on their end I eat the same lunch the Humira rep brought that the Dr does. I have always took pride in being a nurse and my favorite thing about being a nurse is becoming an advocate for my patient when they could not. I have never done it for myself. Now its Nicole's turn to be an advocate for herself because I do have a voice. I hope and do pray that I will get the answers I need and a correct diagnosis would be nice:) Thank you for the reply. Glad I posted I know now I am not alone. Great end to a horrible day!
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1 Reactionhey nic!! jesus christ !!!!!!!i had been that sick at one time but mine was acute not chronic, i had a bacteria infection in my intestines and with proper meds i was able to get rid of it and go on .. i know what that is to go to the toilet 20 some odd times a day.. my ass was sore for that week .. after a while i just got in the shower because it was the only way to get clean.. i was miserable that whole week..its fuckin ridiculous about that doctor of yours i would have grabbed that bitch and said aggressively "look you stupid ass i am sick and what our doing isnt working" !! but it would of gotten me nowhere right..? sounds like it.. i hope and wish you to finally get a sane answer from someone who gives a shit and wants o help.. i was in the hospital 5 weeks ago for a week for a perforated intestine and i am back on my feet and walking and jogging a mile 5-6 times a week. mayo clinic rocks..
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2 Reactionsfeeble.. this may sound weird or another attempt by someone to give you advise on how to live but its the best i have.. reading your post and your profile, it seems you cannot add weight to your frame .. reading your replies and wondering what your not doing or what you are doing makes me think your not eating. sweetheart i feel sorry for you .. i too have a son i never see .. well its a matter of distance and money .. but he knows i am here always .. i gave him my truck for his 16Th bday.. i dont want a pat on the back.. i am his dad.. point taken right?? what advise i have for you is this.. drink whey protein milkshake drinks.walmart sells them for about twenty bucks all you need is milk or water and they will help you gain weight.. it is a start. at least you will get something in you that the body needs. it come in a big container and will last you about a week and a half. if you dont like to eat or want to stay thin as you are this stuff will at least put what you need in you... ok?? give it a try..
Hi there,Theo--- I just want to reply to you and tell you that I LOVE your direct, straight to the point answer, and am super proud of the way you handled your own situation and the fact that you are now doing SO WELL!!! Good for you!! You are an inspiration! 🙂
Hi Theo first day at Mayo. Yes they do rock I love Dr. Heigh and they do not dick around. Plain and simple. I wanted to do that my Dr believe me and I still do everyday. I do not think Dr. Heigh was real impressed with her work. I am not so scared anymore. There is a light at the end of the tunnel. I want to be back on my feet exercising. I will be there soon:)