Once upon a time, there was a little girl who noticed that she had to go to the bathroom more than once in the morning. She didn’t think it was anything at that time… She would feel discomfort and have to use the bathroom every morning a few times before the walk to the bus stop. Not a big deal. But that little girl was me.
The walk to the bus stop was a dreaded one. Not only did I have to get through the walk, but wait at the bus stop for about 15-30 minutes for the bus (no bathrooms around, just standing outside). Then the ride to school on the bus and finally, finally arriving at school. It was always something I was conscious of, but never thought it wasn’t normal. After all, I was just going to the bathroom; everyone goes to the bathroom.
Graduating from middle school to high school meant graduating from going to the bathroom, to the complications of an upset stomach and cramping that didn’t go away once I went to the bathroom. Everything was more frequent and seemed to never go away.
I never ate breakfast, always felt too “full” or “uneasy” to put anything in my system, especially in the morning. I was yelled at all the time for not eating enough; many times I was forced to eat a meal to prove I didn’t have an eating disorder. No one believed me.
I started to notice things taking a totally different turn for the worse with my digestive issues in 10th grade, my sophomore year of high school. I was a busy teenage girl. I was on the varsity dance team, went to tutoring on Mondays to keep my grades up to continue to be the good student I always was, and always had events or practices going on for dance. And being on the dance team meant I was also in the marching band. I remember being in the stands during a football game and thinking, what if I have to use to the bathroom while I’m dancing on the field at half time… what would my game plan be then? I began to feel trapped in these thoughts. Everything I did revolved around bathrooms; I didn’t feel “safe” unless I saw a bathroom close by. This was no way for a teenage girl to live her life. I remember only having Wednesdays off; that was my “nothing day” it was a great relaxing time for me with nothing to worry about.
Then I started to not only have problems in the morning before school, but also DURING school now. I had dance class 2nd period everyday, and can remember stretching or practicing and running out of the classroom to go use the restroom on a regular basis. I hated to miss any part of my academic life, especially dance class. After weeks of this constant urgency, I decided to go to my primary care doctor and see what she thought was going on. Little did I know, this was only the beginning of a very long journey, a never-ending journey.
My senior year of high school I ended up being home schooled for my last semester because my stomach problems were out of control. Getting through a typical school day was out of the question.
I even went away for college my freshman year about two hours from home, and was sent back home due to a huge flare up that I had… how embarrassing. My first weekend away at school with a cool roommate and college away from home all seemed like an impossible dream. All I wanted to do was have a normal college experience – I had been looking forward to this for a long time – meeting new friends, being independent, having fun, and working on starting my dream profession as a nurse practitioner. My grandma was a nurse. When she got sick and was in and out of the hospital, I saw how the real caring nurses really made a difference. Well… all this sickness got in my way. It had ruined a lot of my original plans, and I was not going to stop until I had a firm diagnosis! There just had to be an answer for this.
My primary care physician told me that I had IBS and that it was caused by stress. After all, I was a ‘very busy teenager,’ ‘away from home for the first time’ and ‘worried about school.’ I was hopeful that was it. Maybe my nerves were getting the best of me. But now I had a diagnosis and drugs to help. Because I wanted to feel better, I went home, took the pills regularly for 4 months. Four months of waiting and waiting for things to get better. Even just a little bit. But nothing changed AT ALL. Ok, not this doctor’s fault. I was in a typical age group that had symptoms that a lot of others had.
It was then that she referred me to my first GI doctor. Let’s just call him Doctor A. The first of many, so it’s hard to keep track. Writing my story down made me reflect on how far back this started.
Doctor A did the basic blood work; he had to start somewhere. Seemed like a good start. But that good start came to a crashing halt. He walked in the room with the results, didn’t even sit down, stood by the door, looked at me and said (just like he was ordering lunch), “Everything looks normal, I don’t know what’s wrong. I don’t know what to tell you.” I broke down, I couldn’t believe a doctor would not even TRY to help me figure this out. My mom and I were very frustrated and we couldn’t believe what we had just heard. The callousness, the nonchalant not-a-big-deal get-over-it attitude. No ideas, no more tests to run, no more hope that Doctor A was going to help me. Then the start to find another GI doctor. Hoping that we just didn’t have the right guy. Doctor B was better than the last. I will admit that. At least we were going in the right direction. Doctor B ordered a colonoscopy! At the age of 17, you can only imagine the fear on my face. I thought that colonoscopies were only for older people! We all thought that this test would give us answers. The results came back normal. Most people would be relieved that the results were normal, but this didn’t answer why I felt so bad. Doctor B diagnosed me with IBS Predominant Diarrhea (as if the word ‘predominant’ makes his IBS diagnosis any different than the last IBS diagnosis). And it was starting to sound like IBS was the catch-all for everything that doctors couldn’t explain.
I don’t need to say that was the last time we saw him. I forgot to mention that like a good detective, we followed every lead, every ‘I go to Doctor X and he is the best’ conversation. My math tutor, who now happens to be a good friend of mine, was seeing another doctor in Doctor B’s office and loved him. And since she was feeling better after seeing him, maybe I had a shot too. Our symptoms were similar at the time. I got excited because there was some hope for me. But I quickly learned that this doctor was too proud to admit that he didn’t know everything and put his ego first over my health concerns. Doctor B actually denied our request to see the other doctor in his office and actually sent me a letter that he no longer wanted me as his patient because he thought I was over exaggerating the whole situation! I couldn’t believe that. Never heard the door shut that loudly and quickly. I picked myself up and started the search again.
I then went on to my third GI specialist, Doctor C. But before my appointment, I had a very bad weekend with pain shooting to my back so I went to the care center up the street from my house. Great, not just more of the same pain, but now an additional pain. The doctor there had told me it could be my Gallbladder and that I should get a scan done to get it checked out.
I call him Doctor D as it was yet another stepping stone but he wasn’t a specialist and I really didn’t think of him as a serious answer-giver. But still he was another doctor in my journey through the yellow pages of doctors. He told me, “you are way too young to have anything wrong with your Gallbladder so I don’t think that will come back with any results, but we can be on the safe side and get it checked for you.” In my mind, that basically was saying that it’s in my head and in order to clear my thoughts we should prove me wrong by doing a Gallbladder test. The whole Gallbladder situation seemed to be a glimmer of hope to my family and me. I thought, maybe this is it! After each diagnosis (if you can call them each a diagnosis) I would search the Internet to confirm or deny and get more information that maybe could help the next doctor.
I went and got the nuclear scanning test done for my Gallbladder the next day. It was one of the first nuclear/IV contrast scans I had done at the time, and it didn’t go well for me. The technician told me I “may” feel a nausea sensation – didn’t he realize that I already had nausea – well, he was absolutely right, it got worse! I was practically throwing up all over myself. A week later, the results came back… My Gallbladder wasn’t working at all! Hooray! We had found the answer to all my pain and discomfort! Get that thing out – now! Finally an end to all this. No one could have been more excited about surgery. We even crammed it in during spring break.
Well of course that wasn’t the happy ending to my story. It was too good to be true. It took me a very long time to recover Doctor E’s surgery and didn’t feel any better after ‘the discomfort’ was supposed to wear off. The discomfort never wore off and I never felt better. I couldn’t remember what ‘better’ was supposed to feel like. I called my surgeon thinking I may just be the one patient – the exception to the rule – who took longer to recover. Doctor E told me that he thought something else was definitely wrong at this point. We proceeded to see the doctor that I had an appointment with, Doctor C. He ran so many tests. Endoscopy, colonoscopy, glucose test, blood work, and sigmoidoscopy.
He thought I had Celiac disease so he put me on a gluten free diet, but that made things worse.
The difference between this doctor’s findings and the others was that he actually found some abnormalities but just kind of ignored them. I guess the red flags weren’t big enough. He found my intestinal wall had blunted villi along the lining, usually meaning malabsorbtion. I had lost over ten pounds in a short amount of time. He found inflammation in my stomach, which he diagnosed me with gastritis at that point. He found ‘bumps’ in my terminal ileum from colonoscopy, but didn’t think anything of that either. I was frustrated because he had findings that were obviously pointing to something more than gastritis and more than the typical IBS patients, but yet he again told me that I had a “severe” case of IBS.
He told me that it was all in my head and that I wasn’t trying to get better. He thought I wasn’t being patient enough. He even told me that maybe it was my fault that I didn’t get an answer yet. Since when is it my fault that I was sick? We were obviously not getting anywhere with this one. He seemed to be done with me and honestly I was done with him.
One night I was in a terrible flare up, swollen joints, shooting pains, vomiting, diarrhea, nausea, light headed, and just plain sick and weak. I went to the ER (as usual) and met a doctor who thought I had Crohn’s Disease. I did not understand what that was or what he was talking about, I had originally looked up my symptoms and Inflammatory Bowel Diseases would come up on the search engine, but I never in a million years would of thought I would have something as severe as that.
I forgot to mention that in between all these various doctors visits, I was visiting our local emergency rooms. I should write a book on those – kind of like a travel guide for fellow sufferers. But this visit to the ER was different. Our Doctor F was very personable and was very honest with what he could do for me. He said they don’t specialize in things like this and the only thing he could do for me (or any other ER for that matter) was to make me comfortable. Let’s be honest, since when is being stuck with needles multiple times ‘making me comfortable.’ I have had blown veins, felt like I was having a heart attack, and almost stopped breathing with meds through IVs. Great, another dead end. But Doctor F thought I had an IBD and asked if we had seen his family GI. He raved about Doctor G and said he was good at finding the needle in the haystack.
In case you noticed, I called him Doctor G because my Mom pleaded to get me an appointment the next day. I love my Mom…
We thought this one was it… really this was really it. Doctor G had new ideas and ran new tests. He gave me hope.
But not quite. His theory that I had IBS (just like every other doctor thought) was looking good to him. After a capsule endoscopy (I have lost track of the number of tests I’ve been through), it showed deep ulcerations called, Apthus ulcers, all through out my small intestine (every inch was covered). He came in the room SHOCKED. He could not believe all this time I was suffering from something so chronic. His exact words were, ‘Sweetheart, well no wonder you have been in so much pain!’ Finally, someone who didn’t think I was crazy, FINALLY some real answers! He continued and said, ‘There is nothing else it could be. If it looks like a duck, walks like a duck and quacks like a duck, it’s a duck.’ He prescribed $400 pills that he said I would be taking for the rest of my life. Now this was going too fast. I needed to be sure, so a second opinion was the next step. After all, every doctor had a different diagnosis so we needed a tiebreaker.
My mom was always talking to people in her office and asking for referrals or ideas or something we hadn’t thought of before. Did I mention how much I love my Mom?
The Mayo Clinic was recommended for a second opinion. I thought it was a good idea, seeing that since I would be on drugs forever, I wanted to be sure I was taking them for the right diagnosis. And what better place to get confirmation but at the famous Mayo Clinic?
I thought we might as well go and get the second opinion of the diagnosis of Crohn’s Disease. Confirmation is always a good thing.
Doctor H at The Mayo said he wanted a biopsy of my ulcers, so I did an endoscopy (another), colonoscopy (another), double balloon endoscopy and double balloon colonoscopy (finally some new ones), plus x-rays, and of course MORE blood work. Surprisingly, the ulcers were gone, they said they didn’t see anything. Everything was normal. No it wasn’t! Either I was crazy or no one did their homework in med school.
I was crushed.
After waiting almost a month to hear what Doctor H’s next step would be, he proceeded to tell me that I should probably go on antidepressants because that will help, and to go back to my primary care doctor to see where to go from here. I AM NOT DEPRESSED. I was FURIOUS. AND, START BACK AT SQUARE ONE?! Incredible. Maybe there were incentives to these doctors to prescribe antidepressants, but things just were not looking good anymore for a diagnosis.
But I have to give Doctor H some credit as he offered to call Doctor G to ‘discuss’ my history and see if they could come up with a happy medium.
While I was waiting to hear from EITHER of them, I was hospitalized for a week from a bad flare once again. Funny thing, but I drove out of my way to go to a hospital where Doctor G had privileges, I never saw him during my entire stay. The warm and fuzzy feelings I had toward him turned cold and clammy.
I love my primary care doctor, who I purposely did not give her an initial like the others. She has always been on my side, always tried to help, and never gave up on me. And since I started there, I thought we might as well start again and pick a different entrance to my maze.
My Mom (did I mention how much I love my Mom?) called Shands Hospital figuring that was another high caliber health care facility. I asked my primary care doctor to send a referral – as because I had a ‘diagnosis’ I got onto Doctor ‘I’s calendar sooner than later. They are known for finding the answers to the weird and wacky, and to be honest I have been feeling weird and wacky since day one.
Doctor ‘I’ told me, ‘You do not have IBS, there are clear indications of Inflammatory Bowel Disease (IBD). Even though you have had some normal results, you also have had many abnormal results. And in your abnormal results, it all points to Inflammatory Bowel Disease. Now, we just have to find which one it is, there is quite a broad range of IBD’s, more than just Crohn’s and Ulcerative Colitis. We will get to the bottom of this.’ She was sincere and I felt I was in good hands. I knew, okay, this was the place, I just know! This is the place that is going to find what’s wrong. I just had that “feeling”. It was a great feeling. I felt calm and felt like I was in the right place. No, I KNEW I was in the right place. Finally, a breath of fresh air!
She ordered a more detailed blood work, no one had ever checked the things she did. Then, wanted me to get a CT scan done with nuclear IV contrast. During her research of my prior tests (I came armed with a 3 inch thick file of past test results) she wondered why The Mayo didn’t go further and make additional tests on the biopsies. And instead of doing her own tests and putting me through the same stuff again, she got biopsies from previous biopsies from The Mayo Clinic and had them stained a special way to get the amount of mast cells present in my small intestine, large intestine/colon (wow, tests done without involving me – pretty cool).
FYI, the CT scan was a nightmare.
Blood results came back with a genetic called Stat 3 present in my body. This was a sign that I had an autoimmune disease, and specifically an inflammatory response to the body. She then had a fairly good idea of what was going on.
As she suspected (yes, she was thinking outside the box and thinking of possibilities even before any test results came back), my mast cell count was skyrocketing off the charts.
My hero, I mean Doctor ‘I’, on February 27, 2012, diagnosed me with Mastocytic Enterocolitis. It is an Inflammatory Bowel Disease. She called it ‘the other IBD.’
I always believe things happen in an order and for some reason. Turns out that Doctor ‘I’ performed research and wrote articles about Mastocytic Enterocolitis (I can abbreviate is as “M.E.” – wow, cute, “ME!”). What are the odds that my journey would end up with a specialist of ME.
It is just as severe as the two more typical IBD’s. I have deep ulcerations, inflammation, awful joint pain, multiple bowel movements a day, nausea, vomiting, malabsorption, reflux, and everything else that is typical with IBD.
Mastocytic Enterocolitis is usually misdiagnosed or undiagnosed for a very long time, because most doctors (except Doctor ‘I’) don’t stain the biopsies from colonoscopies for the mast cell count. It is very rare that they do this, but it is very critical that they start! Doctor ‘I’ said she was so mad at the other GIs for not looking at anything other than Crohns and Ulcerative Colitis, and if it didn’t fit cleanly in one of those boxes, it’s IBS and the patient needs antidepressants. I could have been diagnosed many years before this if my first doctor had done the biopsy stains or checked my genetics. Ok, it may be harsh to say the first doctor should have known, but what letter of the alphabet am I on now?
I am in a flare right now, and was on a steroid called, Entocort along with seven other medications to help the inflammation and calm down my mast cells. I unfortunately am not responding to the drugs, so Doctor ‘I’ has prescribed a high dose of a steroid called, Prednisone. I will be on this for about 3 months, and then back on Entocort for another 3 months. I have been struggling with being chronically ill for a very long time, and a lot of damage has been done to my digestive tract and my body. I am very happy that I FINALLY have an official diagnosis, and now will have to focus on trying to get into remission. Most people would say ‘oh, I’m sorry to hear that’ after sharing my diagnosis, but those that are undiagnosed long for a diagnosis. They would say how ‘lucky’ I was that I was diagnosed. But that starts a new chapter.
One more thing on Doctor ‘I’ – she returned a call to her office personally after hours. Hearing how miserable I was, she gave me her cell phone number (yes, a real cell phone number, a real way to contact her) and email address. I feel blessed that I found her, or that she found me.
Through all of this, all of my life goals have been put on hold. I can’t make plans for times with friends or even a movie. I have to wait to see how I feel and even then I could suddenly get sick and bam, plans are cancelled. I am too sick to do the things that I originally had dreamed of doing, but I have now realized that maybe God just has another plan for me, bigger plans that I had originally had for myself. Remember how I said I wanted to be a nurse, well, I know that I am to help others, but just in a different way. I just have to figure out what that is.
Right now, I just take life as it comes, a day at a time, remain positive, and just focus on doing the most I can with what I have, where I am at this moment in life. I’ll never be ‘normal,’ but who of us really is.
A morale of my story is that you can’t give up (note I said ‘a’ as there must be more). I never did, my family never did, my boyfriend never did. And there will be a happy ending (or at least an ending) to these rare or mysterious medical conditions. We just have to find it. I hope to inspire others to get through this and know that they are not alone in their fight. There aren’t a lot of commercials or walks for those suffering with IBD. It’s a ‘silent’ disease and is embarrassing to talk about. But it shouldn’t be.
I hope my friends understand how I have to live my life. I may look good (with makeup and a smile) but I never feel great. My true friends understand me, understand my situation, and understand my life now. I know who my true friends are as they have stuck with me through all of this and have been very supportive.
We all have our crosses to bear in life and now I know I can’t put mine down. But maybe I can help others carry theirs, which may lighten my load. I appreciate the good days or good moments as they come more often than complete good days. I make the most of my good moments and make the best of my bad moments. I guess that’s my lesson learned.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.