If you happened to read my first blog post, Mary and Philip – How It All Began, you may have noticed my mention of my broken body. In short, I like to tell people that everything but my face is broken. Ha!
But if we take the scenic route, the story can get a lot longer…
I knew I would have to focus an entire post about it, and this can only be explained with a timeline of my medical history for the past 2 years.
I know, I know. It’s a lot of dates and information to take in, even for me, and I have lived it. I have tried my best to document every appointment with photos – a ton of selfies and office pictures. I also keep my plastic hospital wristbands – I could make a strand of garland for my Christmas tree since I visit the doctor enough.
Beginning in April of 2014, I began to have stomach issues. When I say this, I do not mean a tummy ache here and there or heartburn in my chest. I was actually shitting blood, to be completely blunt with you, and it terrified me. There was no pain, just the initial shock of seeing it.
Of course, me being me, I have to WebMD the hell out of my symptoms until it eventually convinced me that I was dying or that I had cancer. I knew I had to tell my husband, embarrassingly. I had no idea what else to do.
My father-in-law, Charley, is a family physician, and he was the first person my husband contacted when I told him about my ‘accident’. If anyone knew what to do, it was him. My father-in-law immediately called his wife, my mother-in-law, Ann, and she drove down to our Bobwhite home, and we drove to his doctor’s office.
I was given Dexilant, to help with the inflammation if it was caused by taking Ibuprofen, and I was given coffee, in an attempt to provide him with a stool sample. Oh, what fun it is to bring stool samples to family members. (Side note – I am no longer allowed to WebMD my symptoms.)
After my visit with Charley, I contacted the Cincinnati VA (Veterans Administration), my healthcare provider at the time. I was set up with a consultation with my primary care physician, who, in turn, referred me to the GI clinic, where another consultation had to happen before we could begin testing.
I had never been seen other than for my yearly physical, so we had to start at the beginning. My symptoms never included pain, which was odd. I wasn’t anemic, I wasn’t gluten-intolerant, and I didn’t have cancer. Without an indication of a problem, the VA waited until September to set up for my first colonoscopy appointment, a good 6 months after my first issue appeared.
My experience with this colonoscopy was the worst and set me up for failure for all future scopes. In addition to a syrupy, thick liquid cocktail you get to drink the night before, you aren’t allowed to eat anything the entire day before. This is a problem because I love food, and when I am told I can’t have it, I find myself extra hungry and wanting to snack. I forget I can’t eat and Philip has to constantly remind me. Within the first few hours of the prep-day, it’s already going terribly.
The first mistake I made was mixing in Lemon-Lime flavoring to the entire prep mixture. This made me hate my beloved Diet Mt. Dew for a few days, and it made me dry heave with every glass. Drinking an 8-ounce glass, every 15 minutes is very nauseating and bloating. In total, you have to drink 14 doses, around 64 ounces. This is A LOT of thick slimy liquid to the stomach and I will spare you details of its exit strategy. The prep cocktail – Golytely – it’s a nightmare and worse than the procedure itself, or so I thought.
As for the scoping, I woke up, mid-procedure, in excruciating pain. I still had the scope inside and I could feel it. Having anesthesia, I never remember the procedure, if any details from that day, but during the scope, my anesthesia wore thin and I remember waking up and crying out in pain. There was a video screen in the room, and the ‘in-flight’ movie was my bowels. I could feel the air being blown in, and I could feel them moving around inside.
The nurse knew I had woken up, she wiped away my tears and told me it was almost over, and I faded in and out while watching them loop through the inside of my stomach. I woke up in ‘my room’ after, and I was still traumatized from not being sedated enough, and I began to cry again. I couldn’t explain to you the feeling it gave me if I tried.
Being the VA, my follow up wasn’t scheduled for 3 months later. My colonoscopy results came out normal, as did my blood tests and biopsies. We did find an incidental ganglioneuroma within my colon, to be removed at a later date. (Ganglioneuroma: a ball of nerves that can be located anywhere, mine just happened to be found during the scope). I liked to tell people that I had more feelings since I had extra nerves in my body. Ha.
In October 2014, I had the follow-up appointment, to discuss the results or lack of. I began seeing a dermatologist around the same time, as my symptoms began to include skin ulcers and rashes on my neck and shoulders. Since I continued to be having red bleeding and black bleeding in my stool (yikes!), there were questions as to where my problems were located in my stomach.
Now constant diarrhea and fatigue were issues I gained, and I felt like I lived in the bathroom most of my days. My body hated me. The next step in this diagnosis process was to endure another colonoscopy, this time with an endoscopy, too!
Going in from both ends, we were hoping to find the problem?
Colonoscopy 2, Endoscopy 1
Because the VA Healthcare system has more patients than doctors or time available, I had to wait until January 2015 for my second set of scopes. I had more blood work, x-rays, and tests done before this procedure.
I had seen a fertility doctor within the VA also, and I was prescribed Clomid. In between these appointments, my dermatologist had taken biopsies from my left leg and my scalp, and they concluded that I had chronic folliculitis, but I still question this diagnosis today, as it is still an issue I have today. As for the Clomid, we never began taking it until later in 2015; I was having too many stomach issues and procedures to worry about that at the time. (See Infertile Myrtle and the Nurse Who Assumed).
The GI clinic had suggested IBS in the follow-up consult for these scopes, but this was an ‘easy’ answer in my eyes, I needed ‘real’ answers on what was happening in my stomach. (IBS and IBD are not the same. IBS does not include bloody stools, an issue I had suffered almost a year.)
My symptoms were chaotic, and I tell Philip continuously that it’s just one thing after another, with more problems constantly being added to my shopping list of issues. I was tired, I hadn’t had a ‘normal’ bathroom visit in over a year, and my migraines and joint pain were becoming more recurrent. My skin was starting to become embarrassing for me, and I was starting to have hot flashes in the night, causing sleep to avoid me.
I got more of the Golytely cocktail, but I remembered not to flavor it this time. (FYI: It’s easier and quicker to swallow with a straw or chugging it.)
This second set of scopes went better than the last because I was given more anesthesia to prevent a repeat of waking up like last time. During this scope, the ball of nerves in my colon was removed (the Ganglioneuroma) but had no significant findings, much like the first. I had a follow up for 2 months later, in March. I have pictures from inside my colon, but I’ll spare you from seeing those images.
Doctors had prescribed me with Sulfasalazine in the follow-up appointment in March, and I was sent on my way, hoping it would work. In May, I had to go back to the doctor for another follow-up, to which I had to tell them that my symptoms were still present and the medicine made me worse. I had stopped taking the medicine a few weeks prior due to nausea and vomiting it caused me. I found myself in the work bathroom after every haircut, either throwing up or having more issues. I didn’t need more issues, especially if they didn’t help the initial problems.
ER Visit 1 – My Bottom
Not one week later, on May 19, 2015, I had my first trip to the Emergency Room since I was a kid. I had woken up that morning with pain in my bottom. And I mean, it was pain IN MY BOTTOM. I could barely walk or talk, for fear of tightening my muscles down there. I had thought I had felt swelling the day before, but I figured it was nothing. When I looked at myself in a mirror, there was significant swelling and bruising of the skin. Philip and I knew I had to go to the doctor, so I called my primary care physician and got an appointment that day.
When I went in to see her, I had to show her my issue. I had to bend over the doctor’s office bed and showed her my butthole in all of its glory. I don’t think I could ever be as embarrassed as that again until more people wanted to see it. I was especially embarrassed when she proclaimed in disgust that she was “not touching my hemorrhoid!” Great, now I had a hemorrhoid?
In order to be certain of what she was seeing, she went to the emergency department and got the surgeon in charge to ‘come to have a look’. Even better, now I get to show him, too. I prepared to show this male doctor my issue, when he grabbed my butt cheeks and spread them apart, his goal to insert a finger for inspection. Anyone down the hall could have heard me screaming, I was in the worst amount of pain I have ever experienced to this day. He pulled my butt-cheeks apart and I could have died right then from pain, considering the amount of swelling that had occurred and his forcefulness. I pushed the doctor away and smacked at his hands to remove his grip from me. I was uncontrollable at this point, crying and screaming in pain.
The doctor knew immediately that my bottom needed surgery, or else the swelling was going to cause the skin to rupture on its own. His exact words were to me were “We have to give you anesthesia. To do this without it would be considered cruel.” I was moved to the emergency department and given Morphine, and Philip says at that point my mood changed significantly, and that I may have even been smiling. I had to lay on my side in the bed, and I had to show off my bottom to a few other people, interns, and nurses, but with the Morphine I didn’t care. I was prepped and transferred for emergency surgery.
With inspection, I did not have a hemorrhoid. Thank goodness.
I had what they call a Perianal Abscess, and with surgery to drain it, it should feel significantly better immediately. (A Perianal Abscess is a collection of pus on or in your butthole, in my case. This can be a symptom of Crohn’s disease. Most anal abscesses lead to fissures, and a fissure means there is a tunnel that starts inside the anus and works its way to the outside of the skin.)
After the surgery, I was given a bottle of pain med’s and instructions to go home and take it easy for a few weeks. I was given a sitz bath, to help clean my wound, and was told how to remove the gauze on my bottom at home. They even gave me a plastic pillow to sit on at all times, hard surfaces would only hurt me to sit.
After a few weeks, I was to return for a follow-up and be prepared for a second surgery if a fissure was present. These fissures, or tunnels, can lead to infection and requires the tunnel to be cut out – a fistulotomy.
In June, I had my follow-up appointment, and I was prepared for more tests, x-rays, and then interviewed for anesthesia. The GI doctor had inspected my bottom and abscess wound, and it required the next surgery, a fistulotomy, due to a fissure from my abscess. This meant he was going to cut out the 10 o’clock hour from my rectum, respectively, to prevent further infection in the wound. He was physically going to cut out a pie-shaped portion, from my bottom, to prevent any more tunnels in that segment.
The fistulotomy surgery went as well as expected, and the 10-11 o’clock chunk of my butt-hole was removed. Ha. I was sent home to recuperate, with my plastic pillow in hand again. Having dealt with a sore bottom the past few weeks with the abscess, I knew this was going to require more medicine and care of the wound. I was sore for weeks after this procedure, and during this time I had to say goodbye to my work friends and prepare for our move.
We had just taken an offer on our home and we were preparing to move, but I was given instructions to not lift anything heavy or strain my bottom half, so we got to be lazy and hire movers for the first time. We will never move by ourselves again!
In July 2015, we sold our house officially, and we moved to Georgetown, Kentucky. Since it had been 4 years since we had lived in Kentucky, I had to transfer all of my medical information from one VA to the other. I had to set up patient consultations with the Lexington VA, which meant I had to somewhat start from the beginning in this diagnosis process. I was never going to get better, I have to start all over.
My Cincinnati GI team was beginning to think I had Crohn’s Disease, considering my abdominal pain, urgent bathroom visits, and abscess, but we needed more to prove it. With no information from my scopes and no cause found of bleeding, the only thing to do was more testing.
I was continuing to have issues, with abdominal tenderness and lightheaded spells now joining my problem list. My stomach will get so tender to the touch sometimes, that even leaning my phone or tablet on my tummy is painful. My Cinci GI team had suggested getting a CT scan whenever I experience this tenderness, in hopes of seeing inflammation, which started to happen again in Georgetown.
ER Visit 2
One evening I suffered from this pain and tenderness, so Philip and I took our second trip to the ER, this time in Lexington. At the ER, they have no idea what to do with me. I tried explaining how “my doctors think I have Crohn’s, but they want a scan when my belly hurts. Well, it’s hurting, so I need a CT scan, but I haven’t seen your GI clinic yet, I usually go to Cincinnati…” After a while, we eventually got the scan performed, after much explaining, which eventually came up zilch. Go figure.
We were set up with my first real GI appointment in Lexington, which would cover these useless scans and decide our plan of action.
After I met with the GI clinic, I got yet another follow-up appointment to drink a lovely Berry flavored Barium cocktail, for another x-ray on my stomach. I was forced to drink 3 bottles of the Barium, which meant another belly full of liquid concoction for me.
This scan was different than the scans I have experienced before, but because I was sure I had peed on myself afterward. Yup, you read that right.
During this scan, your genital area heats up so quickly and realistically that you are convinced you have embarrassed yourself when in reality, you haven’t. I even stood up and apologized to the x-ray tech for ruining his machine, and I was shocked when I found out that I hadn’t actually peed on myself. Hallelujah!
After the scans, which showed a possibility of ovarian cysts, yet another issue, I was given a new medication to help with my symptoms, Mesalamine. This medication, like the Sulfasalazine, did not help my symptoms but made them worse. When I had a follow-up for this prescription, I met my ‘second opinion’ doctor, and I was told that I was prescribed the wrong dosage size and that I should just finish the month’s dose and stop taking it.
As for the cysts, I had to get a Trans-Vaginal ultrasound done in September, which showed that I did not have cysts, but that I was probably ovulating. I do, however, have an extra spleen, a tilted uterus that also happens to be retroflexed, but no cysts. At this point, it had been a year and a half since this all began, and it seemed like it was endless.
Since the Lexington VA hadn’t physically done a colonoscopy or endoscopy yet, they decided they needed to ‘get in there’ and scheduled me for November. There seemed to be some issues in getting my results from Cincinnati scopes, so it only made sense for them to see it for themselves. This meant that I got to get an EKG and more x-rays on my body – more appointments.
Colonoscopy 3, Endoscopy 2
Our next appointment was the day before Thanksgiving, which we thought would be wonderful because I’d be SUPER hungry for Thanksgiving dinner, but it didn’t turn out that way. Yet again, I got to drink that delightful bowel prep cocktail and starve for a day.
I went in, had the procedure, and went home, with the procedure itself being very uneventful. The procedure was scheduled late, however, around 2 P.M., unlike the others that were scheduled 8 A.M. so that I could eat sooner. Not only did I not get to eat the day before, but I had to wait half of this day too. I was beyond starving when I finally got to eat, and I was ready for Thanksgiving dinner the next day.
I was extra prepared for this appointment, I had even managed to bring my own non-skid socks to keep my feet warm, and my own homemade hospital gown since the VA only offered parachute size. I was very familiar with a colonoscopy at this point, and I knew what to expect.
But, the next day, I felt like death. I had woken up with a really swollen face and I was missing eyelashes on my right eye. After the procedure, my eyes felt slightly irritated, and at some point through the evening, I had rubbed them so much that lashes came out. I looked like a different person with the swelling, and I couldn’t help but cry when I found out that my lashes could take 8 weeks to grow back. (I love my eyelashes, and I love them big. I had to immediately buy fake ones and teach myself how to use them without gluing my eyes shut. I do have a picture of my swollen face, but I try to only share the picture with close friends because of the reaction.)
Thanksgiving was a bust, as I felt far too rough (and hideous), to go visit the family in Ohio and pretend to feel okay, so Philip and I had our own mini-thanksgiving dinner at home, complete with a baked chicken – our mini turkey, sides, and stuffing. But, coincidentally, this ‘whole’ chicken was missing an arm. Missing an entire arm, but that’s just our luck, right!?
I found this missing arm completely hilarious, the perfect end to a shitty day and the symbol of our Thanksgiving. Side note – We are no longer allowed to schedule procedures before holidays, new family rules.
Once again, my results from this scope came back ‘normal’, and we began to wonder if we would ever figure out what was wrong. The next step my GI was prepared to take was a Capsule Endoscopy scheduled for January 2016. ‘Normal’ scopes, like the colonoscopy and endoscopy, can only see so far in, leaving much of the small intestine unseen. With the capsule endoscopy, you can see from top to bottom, allowing doctors to see deeper into my stomach.
I had to go outside the VA to have this procedure, as they do not offer it. I went to Good Sam’s in Lexington for my consult and procedure, and we were all very nervous about the thing getting stuck inside. This is a common occurrence with the capsule, especially if there is blockages or ulceration’s inside your intestines; the camera can work itself into an ulcer and sit inside, causing an obstruction that requires it to be cut out. This actually happened to a friend of mine the same week as my procedure, he had a few feet of his colon removed in emergency surgery after the pill cam got stuck.
The pill itself was the size of my thumb, and after you swallow it, you are required to wear a belt of equipment, with a battery pack and sensors to pick up the images being sent via the capsule inside. The capsule takes upwards of 15 pictures a second, to which a doctor watches like a video, and looks for abnormalities.
You are required to wear equipment for 8 hours after swallowing the pill cam, or until the battery dies, and then return it to the doctor’s office. You are required not to bend over or strain your stomach too tightly, and the capsule should make its ‘reappearance’ in 24-48 hours unless otherwise stuck. (Thankfully, my capsule did not get stuck but made a reappearance the next day. Ha-Ha)
This procedure was the first of all of my appointments to finally show an issue inside my stomach, and it took months for my follow up appointment, due to how many people that had to look at my imaging. Although biopsies have shown “prominent lymphoid aggregates”, this capsule showed us multiple gastric erosions and ulcerations in my stomach, duodenum and terminal ileum were found, leading to my diagnosis of Crohn’s Disease this past St. Patty’s Day 2016. (Vindictive bowel, as I like to call it.)
Because Crohn’s can happen anywhere in your belly, from entry to exit, having ulceration’s in multiple locations was a telltale sign of IBD, specifically Crohn’s. I have #’s 2&3 In the Image below.
Finally, a diagnosis. This was a much-needed answer to all of the questions I have had, it explained ALL of my symptoms, and it gave us hope for relief. After 2 years, you start to question if there is something wrong with you? Are you just crazy? A hypochondriac? These past 2 years of me stressing out, and stressing out Philip with my non-stop questions and research, and it was all for a diagnosis. The diagnosis meant we could start a medication and hopefully, help me ‘feel better’.
I was prescribed with Budesonide, a drug that could potentially put all of my symptoms into remission, and help my stomach heal without a flare-up. With a diagnosis of Crohn’s, there is no cure. There is only hope that we don’t suffer from a flare or recurring symptoms like I have been dealing with. When I received my prescription, I had a few questions for my doctor, and I waited 2 weeks without hearing from him.
Now, this was not the first instance I have felt like I was bothering this doctor; there was a follow up appointment in the past where I felt I was ‘putting him out’ by just being there for an appointment; he always seems kind of flustered or ‘too busy’ when dealing with me. (He was also the doctor who had prescribed me the wrong dosage of medication that I mentioned before.)
When I called back after 2 weeks of not hearing from him, I was told that I would hear from him that day, as he wasn’t very busy that afternoon. He never called.
His lack of calling made me want to call every day until he returned my calls. I called back the next day and I left another message. I was told that he would call that day, and at the end of the day, he finally returned my call. (It was 4:38, meaning that everyone at the VA had already gone home, and he had intentionally waited until the end of the day to call me back).
When he finally called, of course, I questioned his lack of response to my questions. I had been calling and waiting for 2 weeks! He told me that I was ‘Not High Priority’ for him and that he “Gets a lot of messages”. I thanked him for his lack of concern (with a few choice words in between), and I requested to see my other doctor for a second opinion. I mean, who else am I supposed to call with these questions? I mean, it’s his job?!?
My ‘second opinion’ doctor, the one who I had met prior, met with me last Saturday (April 2). This specific doctor is not a VA doctor, but a doctor with his own practice who is ‘rented’ by the VA for a few Saturdays a month. He is an older doctor and much more experienced I feel, than my other doctor. (I never feel like I am ‘not high priority’ in his office.)
When we discussed my symptoms, he had mentioned Meckel’s.
MECKEL’S!! MECKEL’S DIVERTICULUM!
I knew what this was!! I had actually suggested it to my Cincinnati GI doctor’s years ago when this all began, but we never looked into it and focused on the Crohn’s diagnosis. (Meckel’s is a tiny pouch, sort of like a pocket, in your bowels, and it can cause similar symptoms and bleeding. It’s rare, but worth looking for.)
Today – April 8, 2016
And finally, this brings us to today. I had x-rays on my hand yesterday, got a new prescription for migraines, and we set up for an appointment with a dermatologist and an occupational therapist for my hand.
We are planning for a Meckel’s scan, to be done in the near future. If that comes up negative, we will plan for a double-balloon enteroscopy (a longer version of the endoscopy). If either happens to come up positive, then we will plan for surgery to remove it. Another day, another doctor visit.
Today marks 3 weeks of taking my current Crohn’s medicine, and we are hopeful that it will start to work soon – so far, No Bueno.
I know my experience in this diagnosis has been a long one, but thank you for letting me share my journey thus far with you. It is a stressful situation, but being able to explain it to those around me allows me to vent and share my story with other Crohn’s and IBD patients.
I hope that it all made sense, I can always answer questions if you have them. Thank you to those who made it this far, I know it’s a long and confusing story, but it could be worse. Next time, I’ll try to keep it short and sweet…
My Next Post: Another Week in My Crohn’s Life
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Also Found: Huffington Post