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.
I think many people are uncomfortable with negative emotions and feelings. Typically, one doesn’t receive a life threatening diagnosis and say a lot of positive things about it, even if they are working towards helping themselves. When someone is hurting or just sharing, it is nice to be listened to, empathized with and to know that others are there for you. Below are some tips on what to not say and helpful things to say.
It is tempting to do some of the following:
- You might want to help them to find meaning in their situation by saying something like, “This is a great opportunity for you to think about like differently.” While you probably mean well, allow the person to make their own meaning with it in their own time.
- Go to religion: “God will know what is best. Put it in his hands.” Now, I know that is true for some people, but others may not feel the say way about religion and this also minimizes how the person is feeling.
- Try to cheer them up by changing the subject. They could learn to suppress their emotions or not talk to you about them.
- Tell them that everything will be okay. When dealing with illness, there are no guarantees. This can minimize how the person is feeling. It could also feel like putting a band-aid on a large wound.
- Try to fix it for them by telling them what to do to change things. The person dealing with the illness has probably spend a lot of time thinking about this. They might not know one of the ideas that you have, but they might not be in a place to hear it either. If the person wants to brainstorm with you, that changes things a bit.
- “Stay positive” While staying positive could be helpful. It is important that people express themselves and allow themselves to feel their emotions. Sometimes people learn to feel shame in addition to whatever feeling they are having that is “not positive” due to being told to stay positive or people avoiding talking to them when they are not saying positive things.
Best things to do:
- Face your own fears about the subject of illness and death. Make sure that those feelings are not interfering with your ability to be supportive to others.
- Learn about empathy
- Try to be able to sit with your loved ones when they need you. Sitting in pain with them can be difficult, but healing
- The illness isn’t the person, so don’t focus on it constantly. There is an interesting balance here. We probably over think it. It can be as simple as “how are you doing today?” Go from there.
- Hugs. Some people love hugs and they release feel good hormones.
- “I am here for you”
- Just listening to them
- Asking “What do you need from me right now? I want to be there for you.” They may not know the answer to that question and may want something different each time the talk to you.
- Give space if they need it
- Make yourself available more often
- Spend time with them doing things you both enjoy. Have fun.
- Before offering solutions, ask if they would like your help brainstorming ideas to solve some of the problems that they mentioned. This would be done after a good time of listening to the person to really understand what is going on and to help them feel heard first.
A few things are still unknown. The doctor mentioned that after the next test, we should know what medications to put me on… I don’t want to be on any…
We (Birdy and I) decided to make a game plan. We don’t believe that we have no power to change things for the better.
So here it goes so far. We will be adjusting it as we learn more and experiment:
5-6 meals a day
High Water intake
Rich in anti-inflammatory foods
Rich in anti-oxidants
At least ¼ in liquid (soup, smoothie, etc)
Probiotics daily (combination of food and pill forms)
Vegan coconut Yogurt
Fermented and pickled foods
Omegas (flax oil, supplement)
Beans broken down more (fermented, or soaked a certain way)
Foods to keep in diet weekly
Avocado (raw, in smoothies, mouse, gauc, etc)
MRE is next up on the list for tests to see if there is any sign of Crohn’s in my small intestine. The last two tests were invasive, so I am relieved to have an imaging test. For this test I must be there 1.5 hours early to drink something for the imaging. I am hoping it is a fun flavor like…. Lemon Raspberry Pie.
Learn more about it here:
I have been listening to Eckhart Tolle lately. He talks about not identifying yourself with the illness or the body. Even a simple change in how it is said can bring about a difference in how you might feel about it. It is not “my” illness or “my” body, but “the” illness and “the” body.
“It is not just people with good or near-perfect bodies who are likely to equate it with who they are. You can just as easily identify with a “problematic body” and the body’s imperfection, illness or disability into your identity. You may then think and speak of yourself as a “sufferer” of this or that chronic illness or disability. You receive a great deal of attention from doctors and others who constantly confirm to you your conceptual identity as a sufferer or a patient. You then unconsciously cling to the illness because is has become the most important part of who you perceive yourself to be. It has become another thought form with which the ego can identify. Once the ego has found an identity, it does not want to let go. Amazingly but not infrequently, the ego in search of a stronger identity can and does create illness in order to strengthen itself through them.”
– Eckhart Tolle, ‘A New Earth’
I wanted to share this with you all because it created a shift in me.