It was time for another colonoscopy (lost track of what number I'm on), because things were just not improving at all and it had been about a year since my last one. People diagnosed with crohns and colitis often need colonoscopies yearly to keep track of their disease, so next time you dread getting one, remember that you'll get one and then be good for years while many of us need to go through it once a year. Plus it's especially not fun when you already have digestive issues and it causes a lot more pain than in a healthy person.
This colonoscopy showed there was even more inflammation than any of the previous ones (the symptoms getting worse wasn't all in my head) and the Dr was not even able to get very far, so she didn't even know how high up the inflammation was. I still had the UC diagnosis and the only option was trial and error with medications, my least favorite answer from doctors. I had brought up other options that I thought were worth looking into like endometriosis and motility issues but I was ignored by any doctors that I mentioned this to. I had inflammation in my colon and that seemed to be the only issue they would address. My medication options were getting low because prednisone is not acceptable for long term use and all the other medications I had tried up until this point had failed. It was time to start trying the next level of medications called biologics.
The first one I tried was Humira, a self injection pen, that you've probably seen commercials for. The job of Humira is to shut down the immune responses in your body and if this sounds counterintuitive, that's because it is. Humira and all the biologics are not drugs to be taken lightly, they affect your whole body and can have some severe side effects. Unfortunately I didn't have many other options and I need the pain to stop by any means necessary.
I received the loading dose of 4 consecutive shots at home with a nurse that came to provide instruction. It was so painful that I passed out during the 4th shot and wound up in the ER to make sure it wasn't a reaction to the medication. For the next dose I went to my family doctor as I was uncomfortable doing the injections at home, and the nurse, who assured me that they do this kind of thing all the time, shot off the injection into the room (each pen costs over $5000) and didn't even know where she was supposed to be giving the injection. I was really angry that the office wasn't honest with me about their knowledge of the medication, but they did replace the pen that day so I could receive the medicine on time. I did the rest of my doses at home, always with someone near by just in case. After months my symptoms were ever so slightly improving so I did continue taking it to see if things would improve more, but neither myself nor my doctor were satisfied with the results and still wanted to keep looking for a better solution.
In the mean time I was really struggling to eat enough. I had such a low appetite and I was afraid to eat because of the pain and bloating that always followed. I would sometimes skip a meal just to avoid it, but that would only leave feeling weak and tired instead, not much of a trade off. My body was no longer able to give me accurate hunger and fullness cues so I basically ate according to a schedule to make sure I was eating enough in a day. Had I only eaten when I felt hungry I probably only would have had one meal a day. I was underweight again and just felt very weak all over. I tried to continue to exercise lightly but having to stop every few minutes for an emergency bathroom trip was just frustrating. I felt pretty much on my own at this point but knew I didn't have the option to give up. Getting through the holidays was difficult, because it was really hard to get in the spirit when all I could think about was my pain and how I could get it to stop. Holiday parties were not very fun and I couldn't eat or drink any of the food and always had to bring my own. I do have one vivid memory from that Christmas because it was the day my symptoms did a 180. One day I couldn't stop going to the bathroom all day long and suddenly the next, I couldn't go at all. I was constipated for days and now having experienced both in extreme, I can say 100% I would rather be going all day long than not at all. I really cannot even convey how incredibly uncomfortable and painful being constipated everyday is, and hopefully you have never had my experience, so just take my word for it.
Always wanting to find a natural way to heal, I started seeing a new functional practitioner (Dr. #11) who seemed great and very knowledgeable and, like all the others, positive that I could be healed. A lot more blood tests for her came back showing some deficiencies, parasites, and inflammation, but again, she was sure that everything could be fixed. I followed her instructions 100% feeling so hopeless and desperate to get better. I took tons of supplements, followed strict diets, and all the hippy dippy things you could imagine and then some. I did ion foot baths, PEMF treatments, bought an electric micro current machine so I could do treatments at home daily, RIFE machine treatments, got x-rays of my teeth, followed a very strict diet, gave myself enemas daily (sometimes 2 or 3 a day) for months and months. I meditated, kept my stress as low as I possibly could, journaled, and did yoga. A year later and many thousands of dollars (insurance wouldn't cover) and I still did not have the improvements I was desperately searching for. The supplements and diets became too overwhelming, and upsetting, and I had to go back to western medicine, as much as I had wanted to heal naturally.
My gastroenterologist at Temple ordered another gastric emptying study with the radioactive tracers, so again I was tested at the hospital for a few days with the results showing even slower digestion than the first time. At this point it was unclear if my large or small intestine was causing the delay but the doctor was concentrating on the large intestine as that was where the inflammation in the colonoscopies showed up. As much as I liked this Doctor at Temple because she really listened to me, she seemed lost when it came to my case and I needed to find a doctor that could help me. Through family contacts, I was able to make an appointment with a prestigious gastroenterologist in New York City (Doctor #12). Feeling hopeful due to his reputation, he ran some tests but ultimately came back with exactly the same advice as all the other MDs before him- trial and error with different medications. I just couldn't comprehend that this was the only way to get better. I felt like a lab rat, one that wasn't even responding to any of the medications they were throwing at me. This doctor gave me two options of medications. The first one didn't work, and neither did the second. While I was expecting these results based on my history, he still insisted that there was no cause or other issue to address, and that the only way to get better was medication that will make the inflammation go down.
In order to have a bowel movement at this point I was either taking a supplement called NAT Colon (basically a natural laxative) or giving myself an enema. Otherwise everything was just getting backed up and beyond uncomfortable, but none of my doctors had been able to give me any other options that worked any better. My gastro at Temple ordered an anal manometry test, and yes it was as glamorous as it sounds. As much as I like passing tests, this one, like all the others, showed that there were no issues with my muscles and therefore, still no answer as to why I couldn't have a bowel movement on my own accord. I'd been back and forth between holistic and western medicine and from NJ to Pennsylvania to NYC. It had been 5 years and I still had 0 answers.