Since the PSC is not currently causing any noticeable issues, the Hepatologist wants me to get the IBD under control first. Being that I am not a big fan of medication, I did not take my gastro’s recommendation and begin with Aminosalicylates. This medication appears to have less side effects than the other medications used to treat IBD, but after doing some homework on this medicine, it still has a lot of not so great side effects.
So, as I posted previously, I am taking Turmeric without black pepper to work on the inflammation. I have been on them for 15 days now. They seemed to be doing the job pretty well until the past two days. I did miss one dose the day prior. The last two days I have had abdominal pain and a BMs on the Bristol scale of 5-7. I have not been taking the Apple Cider Vinegar or probiotics regularly. The study that tested the turmeric also had people on medication. So, I am going to keep using the turmeric and begin to regularly take the ACV and probiotics and see where I am in a month.
I do begin my doctoral program in August, so I would like to sort this out before then. I still don’t leave the house in the morning unless I have used the restroom first, so that could be challenging. Good luck to those out there fighting the good fight and working towards a solution too. I’d love to hear from you!
Last month I found out about the Crohn’s and Colitis Foundations Walk for a Cure for IBD. I found out on a Monday and it was that Sunday….so I quickly put together a team and we marched to help raise money to fund research for IBD. It is in our hands to help make the difference. We have power and we have choice.
GO TEAM NIKACHU
Next month Birdy and I will be attending the PSC Partners conference in Cleveland, OH. More info to come from that soon!
There is a test that is recommended for doctors to give their patients whenever they think that it might be PSC. I have not yet had this test, but don’t want to get too hopeful about it either. I am a little disappointed that my gastro diagnosed me with PSC without doing this test yet.
The test is for IgG4 something…. I don’t have a lot of information on it yet. What I do know it that it has been misdiagnosed for PSC and can be treated with steroids. I found a few studies on it.Thankfully I am a doctoral student that has access to a research 1 school’s research library. That being said, I did find some things on Google Scholar.
While I take a natural approach to healing for the most part, sometimes people need medicine. PSC has no treatment except for medicine to treat the symptoms, so it having an option for people who have been misdiagnosed, is hopeful.
I get the test done next week. It is only a blood test!
I read the results correctly last time! My Gastro confirmed it! So, the IBD is in a specific part of my colon, that is uncommon of Crohn’s and more common of UC. It is also just in my colon at the moment. Woot! Also, more on how to figure out all of the test results in a later post. *makes note to self to write that one*
What does this mean for me? Well, my guild and I have been looking into research studies that show positive results without taking medication. I will post the links to the studies at the end of this entry.
What is looks like:
-Turmeric without black pepper. This is because it needs to not absorb all the way and still make it into the colon.
-Pre and Pro-biotics
-And if those that want to try a medicine, but don’t want all of those side effects, we found one study that used a low dose of a very unlikely medicine that is used mostly for helping people come off of addictions.
As always, I am not a medical doctor and nothing in my blog is medical advice. I am one of you, looking for ways to reduce or reverse my symptoms.
We learn at a very early age to feel shame related to poop and pooping. Well, that is all changing for me now. I have so many poop stories. Part of me wants to share so that others also experiencing these symptoms don’t feel alone or ashamed by their experiences. The struggle is very real and normal for someone with IBD. Then the other part of me thinks that people don’t really want to hear poop stories.
Every day is mini boss battle that I have with figuring out which foods to eat that won’t cause pain, urgency, and loose stool when I have to go to the restroom.
Every time I go to the restroom at home, Birdy knows how it went before I ever leave the restroom because he can hear me excitedly saying, “great job”, “Yata!”, “It is a 4!” or he can hear me in my best Eeyore voice saying, “…It was a 7”, “oh… :(” I say celebrate the poop victories and be kind to yourself and your body when it doesn’t happen the way you would like it to happen. Your body is rejecting itself, don’t reject it too. Teach it a little love and tenderness and maybe… just maybe, it will pass that on to how it treats itself.
I keep a food log so that I can figure out what might be making my experiences more on the Eeyore side than the happy “Yata!” side. There is a free app called “My Symptoms” that I use to track what I do during the day in general. This includes what I drink, eat, do during the day, flares, pain, my workout, etc. It looks at what you do and eat that could be related to your symptoms.
***Note: I think that my veggie shakes in the morning might be causing symptoms. While they are blended in the Nutribullet until smooth, they are still raw veggies. I am going to get a juicer and also cook some of the veggies before blending them.
I haven’t met with the doctor yet to discuss the test results from my latest quests (blood work and MRE). In being an advocate for myself and for my party (the party that I have formed to do battle with PSC and Crohn’s), I have looked at the labs myself.
The neat thing about MRE, MRI, and CT scan results is that someone else already did most of the “interpreting” for you. This is awesome. For the most part, you can know what is going on from reading them yourself; however, there are some medical terms that you may not know or know how to interpret from the interpretation. That being said, reading the results from the quests are important to keep yourself informed and ready to ask the right questions when you see the Gastro healer (if only testing was as easy as casting a spell inside of probing!).
It looks like my blood work came back with everything in working order and negative for all of the usual suspects related to PSC and Crohn’s. My blood work did show that my blood cells are still not where they need to be. My red blood count is back to normal and my white blood count is still normal, but some other things are off that could point to anemia. This could be due to the diarrhea that I was having. Absorbing what is needed from the food can be difficult when it goes through you like that.
The MRE showed that my small intestine is in good working order as well! Yay! You keep working it small intestine! No healing spell needed there. It did mention that my colon had some hardening around the walls. I am curious if my doctor misdiagnosed me with Crohn’s, when it is actually PSC. I will find out more in a few weeks. So, we know that the boss is not in the small intestine, but is present in the colon. We don’t know if it is present anywhere else to know if it really is Crohn’s.
I have a funny feeling that more testing is on the horizon.
**Side note: wouldn’t it be kinda awesome if we had healers like most fiction books and movies do? Madam Pomfrey from Harry Potter would fix this up with a flick of her wand. A healer from many of the games and movies would simply cast a healing spell. when are doctors going to “get good” as someone in my party would say?
Alas, we are working with medicine from a non-fiction standpoint. Which means that we have to help fuel science!!!!! I signed up on the PSC partner’s website to give them data for research to find a cure and began looking at clinical trials. Medicine related clinical trials are out for me, but I am game for other studies.
Like when you fight any boss, you want to know what you are working with and where the boss is located. For me that requires another test!
Drum roll please……. and it is a….
MRE, no Google, not the MREs that people in the military sometimes eat, or if you are really into military stuff and eat it for fun. Although, eating those back in the day might have been some kind of test. I hear they are much better now days.
The MRE I am referring to is:
“What is magnetic resonance (MR) enterography?
Magnetic resonance enterography is an imaging test that lets your doctor see detailed pictures of your small intestine. It can pinpoint inflammation, bleeding, and other problems. It is also called MR enterography.
The test uses a magnetic field to create detailed images of your organs. A computer analyzes the images. Before the test, oral and intravenous contrast dyes are given to highlight the small intestine. A drug will also be injected to decrease movement of the bowel which can interfere with the images.
This is not an X-ray. It does not involve any radiation. The oral contrast doesn’t contain any radioactive material. The images from this test are quite detailed. The procedure may take around 45 minutes.” -John Hopkins University
Thank you John Hopkins. 🙂
This is to check to see if there is also Crohn’s in my small intestine. My insurance wasn’t happy about this one (no guild support services). They are likely unhappy with what they would probably call “over utilizing services.” Meaning that I have been to the doctor A LOT lately. They denied me having this done because I had an MRI recently (a few months ago). Luckily, my doctors were able to do a “peer to peer”, which means that a doctor from my gastro’s office called a doctor that is hired by my insurance and they explained why I need it. It was then approved! YAY! I am very thankful for that.
Quest to be completed on Thursday this week! Yata!
Antibiotics are not good for my gut, so I am trying to find other ways to solve concerns that would normally be treated by an antibiotic. I have to do a lot more searching into this before I know what I am doing and even then, I don’t see answers as black and white. The world lives in a grey state. There is no right or wrong. We prove things to be true one minute that we prove false another. It is subjective and relative. Hmmm, what does that mean for medicine? That everyone has to answer for themselves. For me, it means that I am open to trying new solutions (or old ones sometimes).
This week’s mini boss, was a pretty bad ear ache for about 3 days. I think it was an infection. I did some googling and tried apple cider vinegar (asv). I created a mixture (potion) of 1/2 asv and 1/2 water, place a cotton ball in it, rung it out, and placed it in my ear for 5 minutes. I would then take it off, and dry my ear out using hot air. I also gargled with asv each time after my ear was dry. I did that 3x yesterday and 2x today so far. It doesn’t hurt anymore. I hope that it continues to not hurt and I can find other solutions like this.
When I grow up, I will be an herbalist, then an arch priestess. #BigGoals
I guess that being a counselor is kinda like being a priestess.
I can’t get in the with gastro doctor until a month from now. So, I began working towards the regiment that Birdy and I made for me. I am eating 5-6 meals a day. The first 2 are mostly liquid. I am making a smoothie in the morning and after the gym I have a vegan protein shake with a well steamed purple sweet potato dipped in hummus.
For the smoothies, I am trying a few from Green Smoothie Girl and others from my pintrest board. My focus is on the items in the smoothies being anti-inflammatory, having antioxidants, and if I can get in some yummy flavors, all the better.
Yesterday and Today’s Shakes:
During the day I drink water or I make something with apple cider vinegar, coconut water, lemon juice, turmeric, pepper, and ginger. I love tart, so it is great for me.
I am really excited about this one. It is held in June this year at a hotel that is about 5.5-6.5 hours away from where I currently live. As this is a new diagnosis, I am hungry to learn more about it and to find community. There are online platforms for support, but it isn’t as personal to me as being in person. The conference offers something for those with PSC as well as the friends, family, and loved ones of those with PSC.
This is the link if anyone would like to check it out: http://pscpartners.org/upcoming-conference/
Some topics that I find interested me must are:
- Preventive Medicine and PSC Michael Roizen, MD, Department of Preventive Medicine and Wellness Institute
- I love prevention and wellness. They are my foci as a counselor.
- The Basics of PSC (The Basics Track) Carlos Romero-Marrero, MD, Department of Gastroenterology and Hepatology, Digestive Disease and Surgery Institute, Cleveland Clinic
- Learning the basics will be important. I have read a lot, but I’d love to hear what they have to say.
- Interactive Session: T’ai Chi Chih (Caring for You Track) (offered at the same time as the last one *sad face*)
- Tai chi is something that I have always wanted to do… well every since I was a teenager watching Jet Lee movies. This is a meditative practice too, so it is up my alley.
- Issues for Female PSCers in their 20s/30s Moderator: Uma Perni, MD, Department of Obstetrics and Gynecology Panelists: Elaine Bishop, CNM, NP, Fetal Care Coordinator, Natalie Hendrix and Jennifer Sparks, PSC Patients
- Having children has been a topic of conversation between Birdy and I since before we found out about PSC and Crohn’s. I am concerned about this and would love to see what the doctors in the field are saying about it.
- The support groups for females 20s-30s is held multiple times. I am really excited about that.
- Interpreting Your Test Results (The Basics Track) Pierre Gholam, MD, Department of Gastroenterology University Hospitals Health Systems
- I know a lot about bloodwork, insurance, and the medical field compared to most people I think, but this is all new to me. New test, doctors I didn’t know existed (hepatologists), new types of bloodwork. I am just learning how much I don’t actually know. I think as I age that is the case. “The more you learn, the less you know.”
- Traditional and Complementary Drug Therapies for PSC and IBD Bo Shen, MD, and Anne Feldman, CNP, Department of Gastroenterology and Hepatology
- I would LOVE to try something other than “Here is the medicine, take it forever, when you need a transplant let me know and you might get one, then take these meds forever.” It feels a little hopeless.
- General Session I – Presentation 3 How to Communicate Effectively with your Physician Carol Santalucia, Director of Patient Experience
- Currently, I feel more talked at by doctors than talked to or conversed with, so this couldn’t hurt. I may not be saying what I need to say in, know what I need to say, or how to say it, etc.
- General Session II – Presentation 1 Bone Health and Maintaining Fitness Mathilde Pioro, MD, Department of Rheumatologic and Immunologic Disease
- Fitness is huge in my life
- General Session II – Presentation 2 Nutrition and PSC Srinivasan Dasarathy, MD
- I think food is medicine. What do you do when the food might cause the symptoms? But some people think that the right food could reverse the symptoms. I am trying to figure that out and would love to hear what they have to say.
- General Session III – Presentation 3 Functional Medicine: A Different Perspective for Patients Aunna Herbst, DO, Center for Functional Medicine
- Functional Medicine doctors are not covered by my insurance, nor did I find some in my area that specialized in what I need. It seemed that the ones that I found did everything. So, while I love the prospective, I am concerned about it being paid for, and being able to meet my needs.
- That being said. I would love to have a doctor with that outlook about the body.
There are plenty of sessions related to transplants, but that topic scares me as of right now. I am hopeful that the feeling will change over time and I know that I can’t avoid it. One of the first things I should probably begin to do, is find a transplant center. I think I am still in denial that I will need one at all, let alone anytime soon. From what I am learning, that is not the case. It is a very personal disease. It can take years, but it doesn’t always. We will revisit this topic later.