Monday, November 16, 2015

Am I done yet???

I've been absent for a couple months. Anticipation of this baby has made me a nesting fiend as I've been consuming any of my spare time preparing - getting his/her nursery ready, making freezer meals, buying diapers, attending doctor appointments, etc.

In addition to my pregnancy appointments, I also see my Gastroenterologist quite frequently for my Crohn's and Ulcerative Colitis. It wasn't ever that great throughout the first and second trimester but as the weight of the baby puts more stress on my intestines and especially my colon, my disease has become quite irritable. After discussing with my Gastroenterologist what to do, he still heavily suggested I take Humira. It is a biologic medication that is self-administered with a 'pen', much like an insulin pen. How it works is it blocks certain proteins in your intestines that cause inflammation - it's called a TNF blocker. Most moderate to severe diseases can be controlled through a biologic medication. I had decided to go ahead and start this medication after delivery. The information I could find about breastfeeding and Humira indicated that there were no studies done by the drug manufacturer for safety reasons and also due to how new this drug is, but from what researchers could suggest, the protein molecules are too large to fit through the breast ducts. Today, I actually called the drug manufacturer, who informed me that I need to choose one or the other: breastfeed or take Humira. Argh. I understand it is their duty to advise me against breastfeeding due to the lack of evidence on taking Humira while pregnant/breastfeeding, but now I feel thrown for a loop. I don't know that my disease will improve once I have the baby. Perhaps the stress the pregnancy has caused on my condition will dissipate once baby is here. Or perhaps it will worsen. At this point, I feel I must continue unmedicated and hope and pray things improve enough. But if it gets worse..... well, I'll have to cross that bridge when I get to it. I'm feeling very frustrated. But there is absolutely NO WAY I would choose not to breastfeed. I breastfed Oliver while on Remicade (another biologic medication) and studies showed that no more than 0.3% of the drug passed through to the baby. I still made the decision to do both. Depending on the severity of the disease after pregnancy, I may have to make that decision again.

Baby #2 has been different for me in 3rd trimester. My first two trimesters felt quite similar with both Oliver and this current pregnancy, but once 3rd trimester hit, there were some differences. For one, because I was able to get the help I needed right away with my Hyperemesis Gravidarum, I have been able to eat more with this pregnancy, meaning I'm already 10 lbs heavier at this point of my pregnancy that I was with Oliver. I gained 15-18 lbs total with Oliver. As a result, I feel like a whale with this pregnancy and have accumulated some tiger stripes (stretch marks). I also think due to the weight of the baby and other extra fluids in my body, the strain on my sacrum (lower back/tailbone) has been very painful. I bought a belly band to help with some of the pressure and have been going to my chiropractor every other week this trimester. I even got a massage! They all offer temporary relief, but ultimately, the pain will always be there as long as this weight is hanging on my front. I am also carrying this baby MUCH lower than I did with Oliver. It literally feels like it's going to fall out of me half the time. Uncomfortable doesn't quite cover how I want to describe this's to the point of painful.

As any woman who has been pregnant full term can tell you, the last month of pregnancy is miserable. The last couple weeks of pregnancy is murder. I am 39 weeks and am "over it". But I know this could go on for another 3 weeks. 3 weeks may not sound so awful but when you're already 39 weeks pregnant, 3 weeks sounds like torture.

I'll continue to grapple with what to do about my disease once this baby is born, on top of all the other newborn struggles and post partum healing. As always, my support team is incredible. My husband encourages me and says "you're almost done" every day and says I'm doing a good job and listens to my complaints. My mom and sisters, sisters in-law, and friends have been wonderful and cheerful as they politely receive my videos and pics of my baby moving around in my belly, often touching my belly as this little one is very active. Their excitement leaves me excited. My family has been so helpful with preparing for baby, giving opinions on paint colors, and rug options, building shelves and furniture. And of course my mom, thank you for going to the birthing class with us, believing in me and what my body is made for - bring this baby earth side.

Come on, baby. Momma's ready for you.

Wednesday, July 22, 2015

I'm a terrible host

I'm one of the WORST people to grow a baby. My body just isn't ever in a good place for it. Baby needs the Garden of Eden - happiness, peace, and rivers. I'm the Temple of Doom. I am currently sitting at 22 weeks and feel as though the end can't come soon enough. I am so sick of vomiting and feeling nauseous. What Hyperemesis Gravidarum (HG) does to a person isn't just physical. It attacks you the same way any other chronic illness does. It cripples your identity and robs you of life's daily joys. The things in life you used to enjoy, you really can't anymore because you are plagued. I am normally a very active person. As soon as I pick Ollie up from daycare, we are outside, playing, running, biking, swimming, digging, exploring. Now? I can barely make it the 4 blocks to the park and "mommy needs to sit down". I wonder often if Oliver is frustrated with my inabilities at this point.

When you are robbed of your basic joys, you ultimately struggle with depression, anxiety, feelings of hopelessness. These are not "bad" feelings to have. They are feelings. And they must be felt and acknowledged. Ask anyone who has a chronic disease or is suffering through a very serious illness, and I can almost guarantee you they have these depressive feelings associated with the illness. In my case, I know it will end. But keep in mind, when the illness ends, one does not miraculously rebound from the suffering they endured for almost a year. It takes several months if not years to recover from the emotional toll. Keeping in mind, hormonal changes and post partum depression. I plead with anyone going through HG or knows someone suffering from HG, PLEASE, get help (sufferers) and do not judge their emotional status. Just support them and know that getting over this will take time and not to be rushed. It is not something we can just 'get over' or wallow for a bit and move on. We deal with this every day.

But don't be too discouraged; I still do find joy every day in my family and friends, it's just not to the capacity that I am accustomed and that is frustrating. My husband NEVER ceases to amaze me with how supportive and encouraging and understanding he is. You don't really know how strong your relationship with your partner is until you go through something earth shattering like an illness or a chronic disease, of which I have both currently. He tells me daily that he loves me, that I am strong, that I can get through this, and that this SUCKS. I can't tell you how many times he has fetched my "drug bag" (zebra printed gift bag I keep all my meds in and usually have right by my side), ran to the store for random things that perhaps sounded good enough to eat or drink, cleaned the house, taken Oliver on walks so I could rest, sat with me in the hospital. And not once has he complained. Oliver makes me proud and so happy every day and I ALWAYS find joy in him and try to not beat myself up too much that I can't be as active with him as I'd like. And I have friends and family who lift my spirits and are always willing to help.

A couple weeks ago, I twisted wrong and got an umbilical hernia, so I am under orders not to lift much, ESPECIALLY my burly toddler. That has been almost as hard as having HG. Oliver is still very much my baby and although he is almost 3, he loves to be held and carried and I love to do it. He has been a trooper despite this all and I am hopeful that he will never remember this period of his life, when mommy was docile and had to stop carrying him around.

My crohn's and colitis often has angry moments where I'll have active bleeding for several days and usually can get it temporarily back under control with the use of stool softeners and medicated enemas. I just pray I can keep a handle on it until I deliver this trooper of a baby. It really isn't recommended to start a new medication in the middle of a pregnancy, especially as I am nearing 3rd trimester. I believe at this point, it is inevitable that I will have to start on a medication after pregnancy to keep my disease under control as the past few months have been rocky and I am fearful of scar tissue developing.

As always, I am thankful for my team of medical professionals, gastroenterology, midwife, and perinatologist who see me frequently and show genuine concern.

I hope this baby will forgive me for being a terrible host and also fervently pray that all the medications I've taken to survive HG hasn't affected the poor thing permanently. Oliver survived a 40 week Zofran pregnancy, so I hope this little one can make it through the plethora I'm taking this time.

Wish me and my wee one luck.

Monday, June 15, 2015

I'm taking those annoying pictures this time.....

I've been largely absent for a few months in the desire to keep what has been going on in my life private, as battling this additional illness is a familiar one. Travis and I found out we are expecting baby #2 around mid-March. This was surprising and exciting news for us. We are excited for the blessing of another little one and for Oliver to be a big brother.
Week 5

Week 6
 When I found out, I was shocked, to say the least, then almost closely followed by excitement. This was very quickly followed by terror and severe anxiety. This is because my pregnancy with Oliver was a complete nightmare. I had hyperemesis gravidarum and only truly knew that in retrospect. I lost a lot of weight in the first trimester and threw up violently the first two trimesters and even during labor and delivery. I was a walking zombie skeletal pregnant woman. It was complete misery. The thought of going through that again terrified me. I decided to be proactive immediately. I started using essential oils, kept working out, ate lots of small meals throughout the day, packed with protein, got lots of fresh air, weekly acupuncture, preggie pops, the list goes on. But as I suspected, it wouldn't matter what I did, it was still going to happen. Hyperemesis gravidarum (HG) is not morning sickness. I do not throw up in the morning then am done for the day and feel better. HG is a debilitating condition in which you battle constant nausea day and night and throw up multiple times throughout the day and night. You suffer from dehydration, malnutrition, depression, and are at a risk to lose your baby. Starting around week 7/8, I started Zofran (a dissolvable anti-nausea medication).
Week 7

Week 8

Week 9
At week 8, I had my first OB appointment. For several reasons, I decided to go with a midwife this time, instead of an OBGYN. The difference is like night and day. She hugged me and listened to me, and became my advocate. After my first pregnancy, I learned how to advocate for myself, but having a supportive midwife who understood and acknowledged HG made all the difference in the world. We added Phenergan (another anti-nausea medication) to my regime since I was still throwing up frequently and very dehydrated. She also set up weekly IV fluid appointments for me to try and keep me hydrated. So at week 8, I started going in for my weekly IV fluid appointments; however, it wasn't enough, I ended up going into OB triage or the Emergency Room 1-2 more times a week in addition to my scheduled visits. At week 12, we added Reglan (anti-nausea #3) to my routine and that seemed to finally help a bit. I felt like I could start to function. When I went to my scheduled fluid visit a couple days afterwards, the midwives decided to keep me as an inpatient to get my illness stabilized and to look into getting a PICC line and/or a feeding tube. While there, I was able to keep food and liquids down while receiving IV fluids and medications. This was a turning point for me. I am still on all three anti-nausea medications, but now only throw up a few times a week. My nausea is only there about 50% of the time and not as debilitating as it was before.

Week 10
Week 11
Week 12
I owe a big thanks to my midwife for being proactive, taking me seriously, and listening. I was still "crackered" by a couple nurses and still by some acquaintances but I figure they are saying these things because they don't know any better and I can't be upset at them. Being "crackered" means someone tells you just to try and eat a saltine in the morning and drink ginger ale for your "morning sickness". I challenge you to name anything you can think of to help with nausea/HG/morning sickness/vomiting. Please. And I can assure ..... your question "have you tried......" can be met with a resounding "YES". Please don't assume I am in this position because there are remedies out there I haven't tried. Please don't assume I am weak or lack the will to "just get up and move on". Please don't assume this is anything like morning sickness. Please don't assume you know what I am going through. But that doesn't mean you cannot sympathize and offer support.
Week 13

Week 14
Week 15
Support for someone suffering with HG means offering to help clean their house or cook food or even better, don't cook food in my house (barf), bring it over already made and hopefully easily digestible. If nothing else, maybe my kid and husband will eat it. It can mean offering to watch their child/children because physically caring for them is almost impossible at times. Support means telling the sufferer that they are strong, courageous, unstoppable, doing a stellar job, are a wonderful mother. Support means you don't judge them for a condition you personally know nothing about. It is getting them from one piece of furniture to another. Travis often had to carry me as I was too weak. My neighbor once came over to change Oliver's diaper because there was no way I could handle that. Support is not asking the sufferer to do ANYTHING extra and not getting upset/offended when they can't partake in normal activities.  Support is knowing that the sufferer isn't intentionally abandoning you or avoiding you. They can barely make it to work, their DR appt, daycare, or walk through the grocery store without practically collapsing and subsequently dry heaving and retching everywhere. Support is sitting with that person while in the hospital and just being there without expecting anything in return.

Week 16

Week 17
Our due date is November 23rd. Maybe a Thanksgiving baby?! It's probably safe to say I'll be doing my Black Friday shopping exclusively online this year.

Tuesday, February 10, 2015

the ingredients in my witch's cauldron

I am perhaps coming out of the thick of it. My second flare. Many people have asked me what a flare is. I guess I should have explained that a bit more. To be clear, everyone's flare can vary. For me, it means I have frequent bloody and mucousy stools, mostly recently up to 7-8 times a day. Sometimes it's just blood and sometimes it's just mucous. I appreciate people asking me what being symptomatic means because I take it that they care. Or maybe they're just curious, but either way, it's bringing awareness to a disease and that is ALWAYS a positive thing.

I started flaring probably end of October/beginning of November. At that point, I would have a bloody stool maybe once every couple days. It gradually built from one per day, then eventually a couple a day, up until I was experiencing the 7-8 a day. When it gets to that point, I become anemic, fatigued, experience muscle fatigue, and probably a bit malnourished as I am doubtful I am absorbing nutrients.

Following my colonoscopy and the new diagnosis of Crohn's, I had a follow up with my gastroenterologist to discuss treatment options. He heavily encouraged me to get on a biologic immune-suppressant called Humira. He felt this would put me in remission and keep my disease from progressing. I downright refused. It sounds like a slam dunk, though, doesn't it? But if you look at the laundry list of side effects, you might think differently. I begrudgingly agreed to try mesalamine-oral and enemas. Meslamine is a non-steroid and a "heavy duty" form ibuprofen. So it's an anti-inflammatory. Before the appointment, I researched side effects, which were headache, hair loss, abdominal cramping, diarrhea, constipation, abdominal swelling, amongst others. This seems atrocious but Humira had much worse side effects, especially long term. I started the enemas right away after the appointment and hesitated taking the oral mesalamine of 3000 mg daily because I still just didn't feel right about it.

Within a week of my gastroenterology follow up, I went in for a CT Scan to see how far my disease had spread into my small bowel. Keep in mind, my doctor had used the words "Ulcerative Colitis, Crohn's, Ileitis, losing your bowels, exploding intestines, colostomy bags, you're too young". These heavy connotations littered our appointment and left me feeling deflated. I wondered, "what the heck was I thinking? That I was bigger than my disease? That I really could do this on my own, without medication??!!" I did the CT Scan without much hope of a good outcome. My mom came and sat with me beforehand while I drank the murky contrast fluid (3 big cups!) and lifted my spirits.

A week later, my doctor's nurse called with the results. No severe or significant small bowel lesions. No other inflammation other than mild in the lower rectum. No ileitis. I had her repeat it to me 4 times. Then I still didn't believe her and asked to speak with the actual doctor. She said she would see what she could do. A couple days later, another nurse called and said the. same. thing. Wait. Wait. What??!! Are you saying there isn't Crohn's after all? "The CT scan revealed there is no inflammation in the small bowel, ileum, and only mild in the lower rectum." I hung up confused and dazed. Doc still says to take the mesalamine to combat my symptoms in the meantime and prevent progression. I had been using the enemas for about a week at that point and they helped significantly. Nonetheless, still not convinced by my good news, I agreed to start the oral mesalamine. Over the course of 6 days, I experienced terrible headaches, severe abdominal swelling, extreme flatulence, abdominal pain, and on the 6th day, I had a white stool. According to

Normal stools can vary in shades of brown, mostly due to diet. Pale or clay-colored stools are not normal. If your stools are pale or clay-colored, you may have a problem with the drainage of your biliary system, which is comprised of your gallbladder, liver, and pancreas.
Bile salts are released into your stools by your liver, giving the stools a brown color. If your liver is not producing enough bile, or if the flow of the bile is blocked and not draining from your liver, your stools will be pale or clay-colored.
Having pale or clay-colored stools once in a while may not be a cause for concern. If it occurs frequently, you may have a serious illness. You should see your doctor whenever you have pale or clay-colored stools in order to rule out illness and disease.

Certain medications, such as nonsteroidal anti-inflammatory drugs (ibuprofen and naproxen), birth control pills, some antibiotics, and anabolic steroids can cause drug-induced hepatitis. Drug-induced hepatitis is a swelling or inflammation of the liver caused by medications. Drug-induced hepatitis and the related discolored stools usually go away within a few weeks after the medications are discontinued.

Mesalamine is a nonsteroidal anti-inflammatory. My kidneys and liver were having a very severe reaction to a medication that was supposed to be helping me. I called the nurse immediately and told her my symptoms. Her and doc agreed to stop it immediately and once again recommended Humira. I said I'd keep using the enemas and keep them posted.

With the results of my CT Scan, I began to feel renewed again in my ability to heal. Under the coaxing of my mom, I contacted a doctor who does acupuncture. I saw her for a consult and we discussed my history. She could actually relate and appreciate my story because she has Crohn's. We discussed alternative and holistic treatment options, from vitamins and supplements, to essential oils and acupuncture. I have since had an acupuncture session and it was wonderful. I will be continuing that treatment as it is supposed to help with my stress levels and to remain in remission It is also a good tool while symptomatic by shortening the length of the flare.

I also was able to figure out a good regime with the guidance of my chiropractor of when (what time of the day) to take my vitamins and supplements so I am achieving optimal healing by means of muscle testing. I am currently on:

*a probiotic
*whole food daily vitamin Juice Plus
*D3 30K IUs
*mesalamine enemas at night

I currently have maybe 1-2 stools with small indications of blood. This is a vast improvement from where I was even a couple weeks ago. I am feeling more confident as each day passes. This flare lasted about 3 months, whereas my last flare about 4 years ago lasted over 8 months.

It is only when you go through the darkness that you really appreciate the light. I am so grateful for my prayer warriors, encouragers, supporters of my constant hunger for natural healing. I've learned so much this past flare. I've learned I'm not invincible and that stress triggers my flares. I've learned to believe in my abilities again. I've learned that life is fragile and precious and not to squander it. I've learned about acupuncture. I've been reminded of how strong and badass I am to combat this! I've learned once again that this will never go away and yet find myself blessed every day.
Ollie applying an egg wash to our paleo mini bagels. #lilchef

We are OBSESSED with smoothies and protein shakes. This one was a blend of frozen fruit, cranberry juice, a can of grapefruit La Croix, raw local honey, and grass fed beef gelatin.

Running is my therapy.
Is it summer yet??!! #realmenwearspeedos

Our weekend birthday celebration in Minneapolis. I turned the big 3-0 and Travis 31. Me and my OG (Original Ginger).

Sunday, January 4, 2015

Please don't fall

You know that feeling when you are dropping something and you desperately scramble to catch it by snatching the air, fighting all the way down until it crashes? With every clench of your fist and fumble, you think there's a chance you might still catch it! You hold your breath and your body flings into action. That's what we do when we don't want something out of our control... out of our grasp... shattered around us. We claw at nothing and stretch our bodies in the mere chance we can control our destiny.

I've been clawing. I have clawed the shit out of this. I have bent my body every which way. I fight until I hear the shattering at my feet. Then, when it falls, I just stand there. Like.... dammit... how did I let that happen?

I don't know why I keep asking myself that. I didn't 'let it happen'. It just happened. It is a disease. That is what diseases do. They happen. They keep happening no matter what you do, and they will continue to happen. And I hate it. I hate that part of me, that uncontrollable part of me.

I learned today that Start Scott died and saw this on Instagram: "You beat cancer by how you live, why you live, and in the manner in which you live". ~Stuart Scott

I certainly do not want to say that my disease is comparable to cancer, because it is not. Reading this was a good reminder to me to 'stay the course' and to remember that despite having diseased, ulcerative intestines, my body is STILL a temple. I can continue to treat it the way it should be. I can continue to be a steward to my family, friends, work, community. I can show others who are living with Ulcerative Colitis and Crohn's that this doesn't have to debilitate you.

As anyone living with an illness knows, we are not just effected physically. There is an emotional toll that we go through each day. Suffering from a chronicity has been difficult for me. I want to be a 'whole' person and never be weak and be the best mom and wife but sometimes I am hindered. Sometimes I have pain. Sometimes I am fatigued. Sometimes I'm weak. This is not something I take well. I DESPISE IT. And it's not just me living with this. It's something my husband and son have to live with, too.

Being in a flare has sapped a lot of my energy. I hate it for so many reasons. In addition to working full time, taking care of a house, cooking, being a mother and wife, contributing to my community and teaching part time, I am still trying to work out at least 2-3 times a week but I find when I do, it really exhausts me. I have been losing a little bit of blood every day for the past 2 months. If you think about that.... yeah.... I'm beat.

I just can't give it up, though. I can't just stop all my hard work. I can't justify it! I have plans! I plan on finishing top 3 of my age division in a 5K this year. My last 5K, I finished 4th place. I don't have TIME to be sick. I've got goals to accomplish! I've got pride to uphold!

I have a follow up DR appointment next week to discuss the findings of my colonoscopy and treatment. I can't tell you how adamant I am about NOT getting back on drugs. And if you think I don't consider it every day when I go to the bathroom, you are dead wrong. It's always on my mind. But so is the horrendous side effects I had from the drugs I started taking 4 years ago and I will not intentionally go down that path again. I started taking an anti-inflammatory herbal supplement called Zyflamend. I only started it this week but the reviews I have read on it were largely neutral to positive.

Please.... if you are suffering... don't give up. Don't give up your drive or your passion or your goals. Believe in your abilities and your body's capabilities. Believe it with me! I have to trust that I can get through this. I can't 'drop' this. I will grapple and bite and catapult until it hits. Then I will gather the fragments up and rebuild.
Halloween with the Man in the Yellow Hat. Curious George went MIA.

Thursday, December 11, 2014

After the bomb drops

Where do I begin?

I'm devastated. That's the biggest understatement of the century.

Gastroenterologists really need to develop a different way of breaking bad news, other than waking you up out of sedation or anesthesia and saying "hey, you have Crohn's now".

Yes, you read that right. Not only do I have Ulcerative I have Crohn's. For those of you who don't know, Ulcerative Colitis is an inflammatory auto-immune disease that attacks your large intestine. Crohn's is the same thing, except it's in the small intestine. It has progressed. Seeing that ... I'm still in shock. How? When? WHY??!!

I am coping with this news in the same fashion any person goes through a grieving process. My initial reaction is shock. How can this be?? I literally didn't even THINK about Crohn's being a possibility. These were my thoughts going in: my UC has remained the same severity, my UC is worse, my UC is better. NEVER did I think they would discover Crohn's. I have wracked my brain in the past week thinking how this could have happened. Was it because I stopped doing my Remicade infusions? Well, it's possible it may have progressed while off medication, but it's also possible my disease was progressing unbeknownst to me over the past three years that we haven't gone in and taken a look at my innards. It's possible that stopping the meds made it progress faster, but it's also possible that it had already progressed this far while I was still on the meds. We just don't know and won't know. I have to go in to the GI in January. At that point, we'll schedule a CT Scan to get a better look at my small intestines and I'll probably swallow a mini camera so it can take pics of my small intestines, since he was only able to go about 4 inches in. Yeah, that's another thing. He could only go into the small intestines 4 inches, so WHO KNOWS how far that SOB goes ... (At this point I am taking a deep breath so I don't scream and throw my computer).

This brings me to phase two of my grieving process (which is a prelude to phase 3 where I want to throw my computer through a wall). Sadness. Extreme sadness. Disappointing, debilitating, heart wrenching sadness. As the explosion of shock started to wear off, it filled back in with this raw emotion. I cried a lot right after the procedure. I just laid there and sobbed. Travis kind of sat there helpless and my nurse tried to be optimistic. I didn't want to hear optimism. I didn't want to hear what they had just told me. When I was discharged, we went out for breakfast (I hadn't eaten in 40 hours!!) and I cried over my food. Then my brother, Jason, called me. Mom must have turned on her lighthouse (aka sent a mass text). Jason was always the most level-headed of my siblings. I think it comes with the oldest sibling territory. Somebody's gotta keep things under control! He usually will show up in a time of crisis with reassuring words. This is a weird analogy but for you nerds out there, I think of it this way: I'm Percy Jackson, a demi-god, and he's Poseidon (my dad). When Percy is in the thick of something really difficult, Poseidon appears and makes things seem better, by offering a nugget of wisdom. You feel somewhat uplifted, no matter how bleak the situation. He's admired, respected, and somewhat absent (my Poseidon lives in Canada... but he might as well live under the sea for how much we see each other). People mean well, I've learned. And those close to me know that right now, I need to cry and just not say anything... and they just need to listen... or be there and not pester me for more information. Which is partially why I've been silent mostly this past week processing information in my head, because I don't want tumult of inquiries, when I don't know how to answer them. So I you've reached out to me and I haven't responded, please don't take it personally.

It makes me angry that I don't have the answers. It makes me angry that I can't cure this. I'm pissed I have to suffer from this disease. I'm pissed that all my efforts seem in vain. I'm furious that I can't control the progression of this disease. I am sort of see-sawing between sadness and anger right now. I have moments of hopelessness and sadness over this new diagnosis. Then I get really effing pissed. I'm livid. Why did this have to happen to me? Why are my intestines being so mean to me when I've only been good to them? I don't eat wheat, I eat limited dairy, very little sugar, no processed foods, I try to eat organic. I run, do yoga, try to get adequate rest. It all seems for naught. All my vigilance and discipline and research and commitment. It seems almost empty now. I'm so effing pissed.

And I'm also currently in a flare. The first one I've had in about 3.5 years. I don't really want to talk much about that.

This isn't really the best time of the year for me to be so angry so I am mentally challenging myself to remember these positive things:
1) My diet and exercise regime have actually made me a better person, largely controlled my symptoms, gave me daily goals, more energy and a killer bod ;)
2) The only good news I received last week after my colonoscopy is that my Ulcerative Colitis actually looked much better than the last colonoscopy I had done. That truly is wonderful news. I was pleased to hear that.
3) I have a positive/cup half full/supportive husband. And a rockstar family. And a cute fat ginger toddler.

What I'm processing and pondering:
1) Doc wants me back on meds. Questions are... will medicine stop or significantly slow down the progression of my disease? or simply control symptoms?
2) What other options are there than biologics? Biologics suppress your immune system and increase your risk for cancer, in addition to the laundry list of side effects I had the pleasure of experiencing already.
3) If you dare suggest I get back on prednisone, I will strangle you. (that's just a statement, not a question, but I wanted to put it out there....#fuhgetaboutit)
4) How long do I have before I am completely encompassed in this disease and have to lose some of my intestines? Or can that be avoided entirely? Which brings me to
5) Kill me before I have to get a colostomy bag.
6) I hope this isn't hereditary.

Tuesday, November 25, 2014

I hate colonoscopies

The hour is drawing near.

That sounds ominous but I feel a bit ominous as I have a colonoscopy next week. Last year, my gastroenterologist agreed to give me one more year to have a colonoscopy since I was doing well and not having flares or symptoms of my ulcerative colitis. Well, as much as I've wanted to hide, that year has arrived and the DR office sent a letter reminding me to set up a time to come in for the lovely procedure. I chucked that letter in the trash. Then another one came a month letter with a handwritten note from my DR himself....and signed it with his first name. If that doesn't tell you he's serious, then I don't know what does. I begrudgingly called and set up a time to get the procedure done.

Now....what's a little nerve-wracking (other than drinking that nasty stuff that makes you get the runs for several hours to clean you out... and not being able to eat for HOURS....and having a scope up your ass) is that this is the first colonoscopy I have had while not being on a medication. This will truly be a testament whether or not my gluten-free and largely paleo diet is, in fact, effective. I'm also nervous because I know my buddy, Lee (GI doc), will want to talk with me about my refusal to take the drugs he's prescribed for 'maintenance'. He's very pro drugs and has more than once told me not to even mess with holistic healing. Having said that, I feel he does care about me and my well-being. He has worked diligently with me for the past 4+ years to get me to a point where I wasn't doubling over from abdominal pain, and having so much blood in my stool that I became anemic. Luckily, that period only lasted that first year that I was diagnosed with Ulcerative Colitis. Since then I haven't had a flare or severe symptoms. Only occasional and insignificant symptoms that usually happen after I've consumed gluten or refined sugar.

When you know better, you do better. And I'm hoping this colonoscopy will show my GI that I know what I'm doing..... or perhaps it will prove the opposite.

To be continued after December 4th.