My current gastroenterologist was useless. All he wanted to do was try one medication after the next and that apparently was the only way to get better according to him. Unhappy with the care I was being provided with, I asked for recommendations for other doctors. I ended up in Philadelphia at Temple University Hospital.
Not thrilled to be starting over with a new doctor, but hopeful that I could get better answers from a well established hospital, I made the first of very many trips to Philadelphia. With Doctor #9 I started with a new test where they could test the transit of food through my digestive system called a gastric emptying study. I had to eat and drink foods that contained radioactive substances that would be traced on a scanner every hour for 4 hours on the first day, then once a day for the next three days. The results showed gastroperisis (slow moving digestion), so the doctor suggested taking a magnesium supplement to help with that as well as probiotics.
Acupuncture was still getting me the best quick and temporary results, although I was suffering daily and still not at a place where I could live my life. I was able to gain back 10-15 pounds and was only about 5-10 pounds underweight at this point. Yes, I was 20-25 pounds underweight for years and you know what? Only one of my doctors pointed this out and saw it as a concern, the rest never even mentioned it. Yet another failure of the healthcare system to see that a patient is malnourished and to provide any type of care or suggestions for it. As I said in my last post, being so underweight was idolized by strangers, a very sad mindset that most Americans are brainwashed into believing.
Dr. #9 at Temple wanted to try another medication, bentyl, for the slow moving digestion, but I wanted to wait, not ready for more medication just yet. This doctor was different than the other doctors I had up until this point. She actually listened to me, she was open to me trying holistic remedies, she gave me options instead of just saying "take this medication I don't care if you don't want to it's the only option" like all the other doctors did. She was fine with me waiting to take bentyl and always wanted me to be comfortable with whatever treatments or medications I was taking. I would wind up being in her care for 5 years before she moved on to other endeavors and she was truly one of a kind and I miss her greatly, especially knowing how few and far between doctors like her are.
In the mean time I wound up in urgent care with shooting pains in my stomach that radiated up my back. Now, at least I knew it couldn't be my gallbladder because that was already removed, but the pains were similar to my gallbladder attacks. Urgent care misdiagnosed me with GERD and sent me on my way. My Dr. at Temple ordered blood tests and an ultrasound as a follow up because she didn't trust the diagnosis. The results showed nothing abnormal and thankfully the pains died down after a few days. I'm very glad I didn't just listen to the first diagnosis (a theme you will see unfolding here), but I never got any real answers as to what the pains were, they just went away and never came back.
I was still having bloody diarrhea and pain daily so I was prescribed a suppository that should have helped calm down the inflammation the quickest without prednisone. I had been on and off prednisone for a couple years already and it wreaks havoc on your bones and has other negative side effects, even MDs don't like to use it often. A suppository was something I had to wrap my head around. I was not happy at all that this was something as a 27 year old, I had to do. Just the idea of it was difficult for me but I felt like I had no other choice and I was willing to do anything to make the pain stop. I had low appetite, I was afraid to eat, I was constantly bloated, I had lost weight again, and felt very weak. I was afraid to leave the house in fear of having an accident and my anxiety was higher than ever. Sleeping was erratic at best as every time I moved or shifted, I was in the bathroom in pain again. I was still trying to figure out what foods worked and didn't work for me but it was really all just a giant guessing game as one day a food would sit well, while the next it had me running for the bathroom. I was miserable and losing hope and none of my doctors had really helped very much to relieve any of the symptoms. My Temple Dr. recommended I see another functional doctor at Jefferson Hospital, also in Philadelphia. I was up for the idea and hopeful that between these two doctors at prestigious hospitals, they could figure out how to make me better.
I had to wait several months to get an appointment with Dr. #10 at Jefferson as she had a long wait list for new patients, which was both frustrating but also gave me hope that she was a doctor in such great demand. My first couple appointments were out of pocket until I could switch my plan in the new year to include out of net work coverage. Again, she was very sure like the others that she could help me. For a doctor that was recommended so highly, I couldn't believe how much knowledge she didn't have. I stuck with her for awhile as I knew natural remedies tend to take longer to work and I was willing to put in the time if it meant truly healing and not masking symptoms. I followed her strict diet, took her supplements, and even got vitamin infusions monthly (at best I had partial out of network coverage but was still paying quite a lot out of pocket). Nothing improved and with what I was paying to see her, it wasn't worth continuing. The appointment that really made up my mind to stop seeing her was when I walked in and it was like she had never seen me before, even though I had seen her at least 5 times and was going monthly for infusions at her office. She actually broke out a book to look up ideas to help me while I was at the appointment like I was an afterthought. She didn't care enough to do any work to help me outside of my appointment time, which was always rushed, so I didn't continue seeing her. The best thing about working with her was that she recommended a therapist, also at Jefferson, who I wound up seeing for about 2 years to help me deal with my depression and anxiety that was getting out of control. I was grateful for the years of therapy that helped me get through some of the toughest times, but yet again I was paying out of pocket because she was in Philadelphia and out of network.
I was constantly looking for answers on my own. Trying to find a cause or treatment that could help me get my health and life back. It seemed like doctors only took notice of me during my quick visits and in between it was up to me to figure out what was going on. Next up on my list of things to try was medical marijuana. I had read about positive experiences of people who were able to calm their symptoms with marijuana so I figured I should give it a try. I enrolled in the program and found a doctor (#11) that could prescribe it for me and was able to enroll in the program. I still have a current MMP card today because although it did not help my stomach symptoms at all, it really really helped me with my sleep. Sleep is an important part of healing so for this alone I am grateful that I can continue to be part of this program. I am a big advocate for medical marijuana as it truly is a great option for people and, in my opinion, much safer than most of the prescription drugs out there. An interesting fact about the program: everything to do with the MMP must be paid in cash. The doctor visit is paid for in cash (and of course not covered by insurance) and anything purchased at the dispensaries must be paid in cash (again not covered). Although I find it a bit humorous, it also raises a red flag in my opinion, but that's a different discussion for another day.
I wouldn't have wished this pain and suffering on anyone and I was DETERMINED to figure this out even if doctors were not going to help me the way I had hoped. Willing to try anything at least once, my next venture brought me to infrared saunas. Benefits included detoxing, better circulation, improved organ function and more. Through a recommendation I started seeing a local holistic health guide that offers sauna sessions. After months of weekly appointments, my sister and I actually decided to share in the purchase of a sauna for ourselves as it would quickly pay for itself, instead of having to pay to go every week. I kept up with it, and like the acupuncture, it helped with my stress and anxiety but I did not see improvements in my symptoms. I had hoped that by now with all of my doctors and all of my own research we would have found a way for me to be healthy again, but 3 years later and I was no better off, still in severe pain daily. But this disease and these symptoms don't just go away on their own and I didn't have much choice but to continue forward in my search for a healthy body, so that's what I did.