1 year ago to the day...Bumsout Gunsout happened...we raised £7000 for IBD charities and I missed the then world record by 200 press ups... And I’ve been milking it ever since...
Feel a bit shocked that it’s been a year and a bit ashamed we’ve not done it since. My shoulder injury is holding me back. As is my memory of how horrible it was to do 2200 press ups in an hour. And my general gutlessness, both figuratively and literally. But so long as it helps, if it shows that even at your lowest you can still push your body to do pretty amazing things (albeit failing spectacularly) and so long as we continue to raise a smile while bringing positive awareness for IBD patients, then we’ll keep going. And going. Like a shit Duracell Bunny. With his belly stuffing missing. And hopefully less creepy.
My last night with Axel Rose and Gizmo. 💕
Health recap/update: I get labs done every 2 weeks now. The last 2 times my numbers were bad and getting worse. My primary was very concerned last week, called me up, talking about blood transfusions, referring me to a hematologist, iron IV, bone marrow problems, low WBC (1), low RBC, low hemoglobin, low everything, low iron..she said my anemia was the worst it's ever been. She was scared. She called my specialist. He wasn't as concerned bc the current meds can cause the low WBC and some other things (doesn't mean it's still not bad!) So they agree and lowered my dosage of 6mp from 75mg/day to 50mg. They also wanted me to do lab repeat in 7 days instead of waiting 2 weeks. I did those yesterday. Everything is still very low, but good news is my WBC is up to 2 now. With the mercaptupurine reduced, I've had lasting energy each day! I thought for sure I wouldn't have those heart "scares" again. Well, yesterday I felt like collapsing while at work. Luckily I had my pulse ox on me. Turns out I was right. My heart rate sat in the 30s for 10-15 minutes while my oxygen sat in the 70s to 80s. I couldn't leave work, so I waited. My HR dropped down to 24 at one point which really scared me. This happened again 2 hours later. I nearly went to ER, but by the time I was off work things stabilized (and remained that way) for the rest of the night. I called my specialist today and they've now referred me to a cardiologist.
Progress. Good news, I was able to play with the kids in PE today for over 40 minutes! Not sure how, but it was amazing! Felt so good to exercise. I haven't had energy like that in MONTHS. My body is so unpredictable these days. lol
Excuse me but white and navy aren’t quite my colours 👗
Okay so first things first, it’s safe to say hospital gowns are the most unflattering fashion accessory known to man, then I’m handed paper shorts with a big hole in the back, I half expected Jonny to appear through the gap when the Nurse held them towards me.
So it’s safe to say yesterday didn’t go to plan at all, my second lot of moviprep wasn’t playing ball and I started to vomit so following instructions I stop drinking immediately. I proceeded to the hospital and fill out my forms for the nurse to then tell me off for doing as my prep guided said so. Iv never been more confused, don’t send out my instruction guides if you don’t want us to follow them surely!?.
Thankfully she agrees to carry on anyway seen as I came - how nice of her!
Then I’m told I need a cannula which is fine, if you not absolutely terrified of needles I asked if I could have my dad in with me just while she put this in knowing fair well it will be the only thing to prevent a panic attack or worse and that wasn’t allowed, so first attempt needle goes in with cannula and like something never seen before it literally fired back out across the room like a bullet followed by me hitting the deck this happened a further time and then the last two attempts they wouldn’t flush 😔. So having failed in them I’m told we can’t do a full scope today because it’s far to dangerous without one in. Now this has left me with so many mixed emotions as the majority off my problem comes from my ascending and transverse colon. But again she still decided it’s best to check the descending side which I must add was a lot healthier looking than last time but when reaching the top you could see the start off the inflammation and ulcers im still battling with but unfortunately we could go no further. Now I feel like where just back to square one and no new information was found why is this disease so complex and frustrating. All these medications Iv been placed on, steroids for 9 months and still my bowel doesn’t look healthy I’m preying today when I see my surgeon he will agree to dig deeper LITERALLY! #crohns#crohnssucks#crohnscolitis#colitis
Today was my EUA for my never-healing abscess. They did their voodoo & all went well. Hopefully we see improvement this time around. In the meantime, Hubs couldn’t find Otis this morning. Why? Bc Otis burrowed himself up in my blanket after I left for the hospital- he was keeping my spot warm for when I came home to recover ❤️ Sure enough when I got home, he & Tessy were waiting at the door for me looking to keep me company ❤️#ilovemydogs#crohns#crohnscolitis#crohnsdisease#ibd#invisibleillness
I don’t post about this stuff too much, but I feel like this needs to be posted. Having multiple chronic illnesses aren’t easy. Especially when having one disease sparks another, and another, until you’re caught up in this cycle that you feel can never be escaped. Anyways, yesterday I had a liver biopsy because the doctors believe I have Auto-immune Hepatitis which is inflammation in the liver when it’s being attacked by the body. This is the third autoimmune disease I will be diagnosed with in less than a year. Although this journey has been quite extensive, I’m looking forward to the moment where I am pain free, medication free, and most importantly, disease free. Some say it cannot be done, but miraculous improvements are already taking place and will continue to do so with hard work and determination.
Cheers to this long road that will end with great payoff🥂
She’s a perfect 10, but she wears a 12 🎵🎶 Im absolutely ****ing starving!
Now there is a January diet and then there is MY January diet, not by choice but thanks to prep I’m having to starve and shit myself while also having to drink laxatives.
So this is my first time drinking this stuff in prep for tomorrow and my god surely having crohns colitis is enough of a sacrifice I have to make in life, not even when mixed with orange juice does it mask the taste of this stuff.
Please dear Jesus surely they can make a better tasting drink especially when your having to have two litres of the stuff. And if that’s not painful enough all I want is a piece of bread just to mask the hunger, honestly i could eat a scabby horse. I have to keep reminding myself that tomorrow is D-day, the day I finally (hopefully) can have my full scoop as my first one had to stop within two inches because my bowel was that inflamed and ulcerated they risked perforation, hopefully this time even though I’m still in a flare up they can go further and dig out more answers and hopefully the answer I’m looking for! I’m hoping the surgeon will agree to the surgery that I want, I want my bag! I’m ready now. Although I know and he knows we don’t have much option and I will be facing surgery at some point my surgeon only wants me to have a section removed where as I want the colon gone now. I can’t cope with this pain no longer, I want to wake up and not have to worry about have I brought my spare pants and knickers for well you know just incase. I want to be normal even if it’s just for a year I’ll take it
And if I get my answer I promise next time I’ll drink my moviprep like a good little girl
So we have my relatively pretty Terminal Ileum then swipe to see my bubble-gummed Hepatic Flexure. Entyvio and Methotrexate have joined the long list of meds that have failed me. I am starting Stelara ASAP. But, it is currently the end of the line. If I’m a few months it doesn’t show signs of working, the next step is colon removal. I’ve been on Prednisone for about a week now with little to no improvement and if they don’t kick in soon I’m to be admitted to hospital with potential for a sooner surgery. So there we have it. #crohnscolitis from the inside and #medicationfail galore #crohnsdisease#ibd#invisibleillness#eh
Yesterday at around 3 am I woke up from pain and vomiting. I was rushed back to Mount Sinai hospital in extreme pain and confusion. After a very long day of tests, tubes, and medications we were finally given answers by the GI specialists. Due to the extensive surgery involving the removal of my entire large intestine/colon, my body was not responding as it should be. My small intestine had what's called an ileus, which is essentially a lack of movement in my small intestine, causing intestinal obstruction. Because my small intestine is "shut down" right now, I have to have tubes that flush out the stool from inside of my body. Apparently this can happen at any point to anyone who has colostomy surgery so it's important to be aware of it. I'll probably be in the hospital for a little while until they can get my small intestine/bowel to start back up again and work properly. This has also had a tremendous impact on my family and girlfriend..I have to give a shoutout to all of them because without them all I truly have no idea where I would be right now. Thank you especially to my amazing girlfriend Kelly who has stuck by my side since day 1 with all of this. I truly don't know what I'd do without her. She has been my rock and helps brighten up my day when I'm feeling down or feeling like I can't handle this! I love you so much Kelly! •
It’s been a good day! My recover has been going great! I walked 2 1/2 miles around the hospital floor today! That’s 25 laps!! I also had output from my stoma, ate solid foods, and got my IV out! I’m set to go home tomorrow!
I told my surgeon before she took me back to the operating room that I trusted her to revise my stoma the way she felt was best. I just wanted it done right. There was a possibility that she could do it from the stoma site but most likely she would give me an incision. When I woke up in recovery I was most interested to see my new stoma and then to learn if I had an incision, which I did. It runs down the middle of my abdomen, same as last time but isn’t as long. I don’t have much pain surrounding my stoma but do around the incision. I’ve been able to control it with Tylenol and also walking helps. 01/13/18 #ileostomy#stoma#revision#surgery#crohnscolitis
Infusion day was today - thank heavens. Things have been a little rough around here. It feels like everything is hitting us all at once & anxiety levels are pretty high at the Vihlen house. When it rains it pours right? Cue angry colon. Planning on spending the day in bed tomorrow recuperating - hoping to incorporate some much needed meditation, prayer, & deep breathing. ————————————————————————
Tiki update: her ear surgery went well but she is absolutely pitiful & looks like an animal tried to chew her ear off. Breaking my heart to see her this way... don’t plan on leaving her side for a while.
My Infusion day tradition continues on with this @tattly @riflepaperco floral. unfortunately it didn’t occur to me that the peach flowers wouldn’t show up haha but I still love it! ————————————————————————