Complicated Allies

I think that my posts will have more space between them now as I begin my doctoral program. I know it has been awhile and most will want an update on the progress of my lifestyle changes and health changes as they relate to my health concerns.

Let’s first talk about complicated allies.

When working with a chronic illness, a holistic team approach is the way to go. For those of you that hear holistic and think that the term is hocuspocus, it just means that we are looking at things from a whole person approach (mind, multiple body aspects, etc). Since moving to a new city and has a big medical school, things have changed a lot with my health team.

The allies on my team now:

-Primary Care Provider (PCP): For the first time, I really like my PCP. He listened to me, explored my concerns, didn’t talk over me, and most importantly, was open to my suggestions from research that I found. He ordered labs and sent my thyroid prescription to my pharmacy while I was still sitting there. Awesome! I walked out of the room into another room, got blood taken, and by the end of the day he emailed me with the results and a game plan. I can also email him directly. Say wha?!!!

-Gastro (GI) Doctor: I haven’t met with her yet. I am going to try to convince her with studies that I found, to out me on low dose Naltrexone. I am sure that my thoughts about her will depend on her willingness to try this with me, as it has worked with others and has little to no side effects. This medicine is for IBD symptoms and used for PSC for itching. While I don’t have itching, I don’t want to take the other medicines for IBD due to the side effects and let’s face it, I don’t like taking medicine much anyway.

Hepatologist (liver doctor): I think that she is nice and might be open to hearing what I have to say or try, but she isn’t convinced that I have PSC. I don’t want to have PSC, but after attended the PSC conference, I know that just checked the blood work isn’t enough to say that I don’t have PSC. My MRI and liver biopsy said that I have it. According to the doctors at the Cleveland Clinic, PSC doesn’t have any markers specific to it, so bloodwork is not the way to test for it and since you can have PSC and it not progress for a long time, MRIs aren’t even that great for it. Even biopsies may not show it, but someone could still have it. So with my MRI and biopsy showing it, I just wish she didn’t dismiss it so easily. Trying to get her to understand how testing works for PSC is difficult, because she is the one schooled in the liver, but PSC is so rare that most doctors don’t know much of anything about it and she said, “we don’t want you to have PSC.” As if I was fighting to keep it as part of my identity. I had to sit back and process that for awhile to see if that was the case, but it is more about misinformation being part of my healthcare. I don’t want to feel relief for the absence of a disease that I actually have due to misdiagnosis. The solution to this for me will be getting a second opinion at the #1 clinic in the US for PSC (Mayo in MN) and continuing my MRIs to track any progression

Dietitian: I have not met with my foodie doctor yet. I am excited to do so, but don’t want to be too hopeful. My partner met with someone awhile back and they couldn’t give much advice because we eat so healthy as it is. Maybe they will know more about how diet relates to the liver and IBD. Studies show that elimination diets don’t actually work. When I hear a doctor say that, I lose a little faith in them not being up to date on the research in their field.

So right now, I have all of these people on my team and some are more open and supportive and others are …complicated.

Update about the Turmeric for IBD +1 to figuring it out

Hey everyone,

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!

Getting Involved

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!

Something else that looks like PSC but isn’t? Knowledge is power.

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!

Understanding the magical writing of medical terminology +2 Intelligence

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.

https://www.ncbi.nlm.nih.gov/pubmed/17222320

http://journals.lww.com/ibdjournal/Abstract/2013/12001/P_015_YI_Low_Dose_Naltrexone_Therapy_Improves.53.aspx

https://examine.com/supplements/curcumin/

Poop Victories (+5 hope, +2 /dance)

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.

 

Boss Location Revealed!… or is it? (+2 confusion, +2 intelligence)

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.

Quest: Reveal the boss’s location (+2 fatigue…another test?!…ah…man…)

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 (-5 health). I think I’ll try a magic potion…

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 want that +10 to health meal with healing effects

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:

http://www.thefullhelping.com/anti-inflammatory-berry-watermelon-and-ginger-smoothie/

AND

http://greensmoothiegirl.com/2016/09/20/my-most-famous-recipe-hot-pink-breakfast-smoothie/

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.