Last week, I wrote about colitis. I received an interesting question about that blog. A reader wanted to know if what I wrote about colitis is the same for Crohn’s Disease.
Not being a doctor, I didn’t know. So, once again, we’ll find out together. I don’t even know what Crohn’s Disease is, but my favorite dictionary for the last six decades or so does:
“chronic inflammation that typically…
Cool. Cool. So my endo specialist left the state without telling her patients, the female obgyn whose number she left in her place with her former secretaries has excellent reviews for herself but horrible reviews for the front desk staff who never answer the phone (can confirm, I called and left 3 voicemails before giving up, they just never called me back), and the male obgyn whose number she left DID meet with me and got me in for pelvic floor PT, but will not sign off on my intermittent FMLA paperwork and gave no explanation as to why. My PCP can only sign off on 2 days per month of FMLA because she’s not a specialist, but my worst flares have lasted anywhere from 5-7 days because, surprise, I also have colitis that doesn’t respond to meds or dietary changes (probably because there’s endo compounded on top of it and also causing GI issues!!!)! But the GI I see just doesn’t do FMLA for some reason? So fuck me I guess. I’m down to 1.5 days of sick leave, and have been having weird new kinds of pains in the same area I get all my endo/colitis pains, new pains that do not respond even to tramadol, an ***opiate.*** The pain was so bad over Christmas break, I couldn’t get out of bed for a few days. So I guess I just have to take the 2 days FMLA from my PCP, even though that is nowhere near enough and I will probably lose my job because none of the fucking “specialists’ I see know how to treat any of this. I hate this fucking country I hate this fucking country I hate this fucking country.
My ass landed in the ER this morning.
Turns out it’s a bad case of colitis.
I’ll be on a clear liquid diet for the next 24 hours. Then, I have to gradually work up to solids.
Ughhhh.
At least L was with me the entire time in the ER. And Z and KP checked in on me. Now my mom and sister are here to take care of me and spend the night.
I’m wiped out, but very, very grateful.
:| chronic illness venting sesh ahead-
[[MORE]]I cannot keep doing this pattern of “2.5 months of teaching nonstop while pretending not to notice my endo and colitis symptoms that no amount of meds or dieting or surgery seems to be helping,” only to collapse in the last month of the semester and miss anywhere between 3 and 7 days of work, then coasting on the bare minimum for the last couple weeks only to collapse *worse* during break. I am going to be 33 in two days and my goddamn body is breaking down, and my mental health is deteriorating quickly too. I feel like I’m going to snap at any second because I’m just in constant pain. And my coworkers just. Don’t care. They won’t help me with the teaching load, and when I tried to tell them I couldn’t be lead instruction librarian anymore and wanted to focus on less structured, less intensive things like weekly arts/crafting programs for our students, etc., my supervisor said “well just do both that and the teaching” and completely ignored the point I was trying to make that I *physically cannot keep up with the teaching load* and it’s unfair to the professors and students as well to have to rely on someone who can’t control her flares and may have to cancel a class last-second and throw a wrench into their entire semester’s calendar.
Ugh.
Think I’m gonna have to take a Tramadol tonight. I have some left from February, the last time this cycle happened so bad I ended up in the ER. All I did yesterday was wrap some gifts, try (and fail) to bake an easy 4-step recipe, and throw in a load of laundry, and now today I can’t function because apparently that very small amount of labor was enough to trigger this horrible flare. Every 20 mins or so, an inflammatory pain in my hips and abdomen spikes so bad I have to stop whatever I’m doing to sit and breathe thru it. Ice pack, dicyclomine, tylenol - none of it’s working. Usually I take some THC to help me sleep thru mild pain-induced insomnia, but I don’t think that’s gonna cut it tonight. I can’t even recline comfortably rn.
All I want for Christmas is for billionaires to get life-altering chronic illnesses. Think of the sheer amount of funding the research labs for colitis would get if Elon Musk had to run to the bathroom six times a day, every day. Really, he owes it to the world to get very, very sick with the diseases that get no publicity/funding because no one wants to think about their messy, embarrassing symptoms. (Or to just donate out of the goodness of his heart, but we all know that will never happen.)
Oh, I haven’t had a colitis night as bad as that for a long time. Not quite sure what triggered it but bloody hell that was rough. I can be fine, fit and healthy even, active and busy and working out hard and doing all kinds of things, with only minimal symptoms and then every once in a while colitis will hit me with ‘don’t forget colitis counts as a fucking disability bitch, and this is why’
Lying in bed at 3am, working out how to get through the next day, do I need supplies, what can I eat, do I have to cancel my plans, how long will this last, is this finally the attack that lands me hospital, or worse?
Good to have Tumblr to scroll through at those times. The 3am bleakness used to hit a lot harder when I was lying in bed all alone, staring at the ceiling (or crouched on the bathroom floor, too exhausted to move after the latest bout of vomiting)
The Scientific Research Notes Of S. Sunkavally (years: 2002-2011).
4183-4188.
Friend got me a bidet 😱😳 talented, brilliant, incredible, amazing, show stopping, spectacular, never the same, totally unique, completely not ever been done before, unafraid to reference or not reference, put it in a blender, shit on it, vomit on it, eat it, give birth to it
Doctors have long puzzled over why smoking eases ulcerative colitis but worsens Crohn’s disease. Oral bacteria migrating to the gut may explain this enigma.
Summary
The long-standing mystery of why smoking alleviates ulcerative colitis but exacerbates Crohn’s disease might be linked to oral bacteria reaching the gut. This suggests that changes in the gut microbiome, influenced by the types of…
Why Smoking Surprisingly Soothes Ulcerative Colitis Symptoms - New Study/Science Updates
I’m so frustrated, I finally get a new GI specialist and he’s checked out completely, just did not care. Didn’t let me explain, did review my previous documents on my conditions, when I asked questions he didn’t answer, asked why I am taking adhd meds (let’s use context clues sir) and then said “well you have anxiety so you need therapy” yeah I’m in therapy and while anxiety can trigger my illness it’s not the cause sir. Not to mention the LAST doctor who used anxiety as am excuse was referring to my literal paralysis and dismissed me, meanwhile I had emergency surgery two months later because it turned out I was actually dying. Fucking hell. He ordered all the tests I’ve already done and gave to him, I’m just so defeated. I’m so tired of this medical system, I’m tired of bad doctors and gaslighting doctors, I’m tired of the USA, I’m tired of struggling to survive, I’m so fucking tired.
la enfermedad inflamatoria intestinal se descarta a través de una colonoscopia con una biopsia
el dolor está avisando de que sucede algo así que si algún doctor te desestima diciéndote cualquier tontería el dolor estaba avisando y tu cuerpo te está diciendo que algo sucede, el dolor es común pero no significa que sea normal
yo por ejemplo la única característica que tengo la enfermedad de Crohn es el dolor (y normalmente las características suelen ser sangre en la caca, moco en la caca, distensión abdominal, fiebre, dolor), o sea que de las cinco características solo tengo una de ellas y muchas veces los médicos me desestiman por esto, ten en cuenta que lo que se llama estar en remisión no lo dice el médico sino que lo dices tú, me explico. muchos médicos lamentablemente te dicen que estás en remisión incluso cuando tienes dolor pero las remisión está cuando no hay ninguna característica en torno a la enfermedad, es decir si la analítica no aparece inflamación y parece que con las pruebas de imagen tampoco aparece nada pero tú tienes dolor no significa que estés en remisión, porque la remisión no la define el doctor sino que la define el juicio clínico que tiene que ver con también tu estado físico y tu estado de dolor.
lo que hago yo para el tema del dolor en la enfermedad inflamatoria intestinal
-Tens machine que es básicamente un pequeño dispositivo que te pones parches en la barriga o donde te duela también se utiliza para fibromialgia u otros dolores y da pequeñas descargas eléctricas
-Recomiendo que puedas salir a oficio de suelo pélvico esta es una cosa que digo en general pero específicamente para personas con enfermedad inflamatoria intestinal como suele tensar muchísimo la zona lo recomiendo no solo personas con útero sino también personas que no lo tengan, pero si además tienes útero y tienes la regla y te duele sería fantástico que puedas ir a un fisio de suelo pélvico
-Aceite CBD recomiendo que sea del 30%, no coloca porque no tiene THC y me pongo gotas debajo de la lengua
amibolapuntocom tiene una guía en cuanto a cómo responder a gordofobia médica y recomiendo que la puedas leer porque es una guía tan fantástica que también te sirve para poder responder al racismo transfobia y cualquier forma de discriminación médica
mvione@proton.me por si necesitas algún tipo de ayuda en cuanto a consejos o cualquier cosa 💗
#Crohn #Colitis #autodefensasanitaria #CamaradaDemian
Personal health & venting stuff–
[[MORE]]So since I came home from the trip to NYC to see Taemin, I’ve been dealing with some pretty fuggin horrible health issues. I thought it was my endo growing back–and it could very well be partly so–but I ended up in the ER days after coming home from the trip, and was diagnosed by a GI with chronic colitis now as well. They put me on mesalamine 6x a day, and dicyclomine 4x.
Unfortunately, all the meds I take to manage my endo and GI symptoms–imodium, excedrin, ibuprofen, even tums and pepto bismol–cannot be taken with mesalamine due to complications. And on top of that, the mesalamine takes 3-6 months, according to my GI, to take full effect and send colitis into remission (if it works at all–it only has like a 70% success rate or smth).
So. For going on 3 months now, I have been having to deal with frequent flares. Like, pretty much daily. They’re not as severe as they were before I took mesalamine, but they are more frequent, and I can’t manage them with OTC meds anymore.
I’m getting so fucking mad and depressed about it. I got *extremely* lucky that I didn’t have a flare on the trip to see Onew, but that took a week of fasting, only 2 micro meals a day (cutting out breakfast entirely) + nothing but water to drink. I was terrified to even eat dinner before the concert, tho I did and was fortunate to not have a flare.
But I’ve had to miss multiple local activist events I’ve wanted to attend because of this, and I’m starting to think the mesalamine won’t work and I’ll just have to live like this forever. The dicyclomine barely works to stop the cramping anymore, and not to get TMI but I s2g I spend half my day in the bathroom. We’re severely understaffed at work too while another employee is on med leave for 2 months, so there’s a lot of pressure for me to be there even if I’m not feeling well. I ended up going home early yesterday, felt better this morning and afternoon, and then got slammed with another flare because I dared to eat dinner and now I have to miss *another* event I was looking forward too. I’m so sick of this shit.
If anyone else has experience with mesalamine, or the combo of endo + colitis, I’d love to connect and chat about stuff. Solutions, or just commiserating, idc. I’m tired of feeling lonely and isolated over this.
That ostomate feeling when your skin is itchy underneath your bag and you can’t itch it (● ˃̶͈̀ロ˂̶͈́)੭ꠥ⁾⁾
God thinks She’s sOOooOoo funny making me need spicy food to enjoy life and also have ULCERative FUCKing COLITis
YOU BITCH I’LL BURN MY ASS IN HELL
Successful ER visit b/c I had a nurse and doctor who actually listened. Imagine that. Most of the time I’m written off like “it’s a colitis flare, call your GI” (fucking duh?) but this time they actually investigated, listened to my concerns, and prescribed the appropriate meds.
CT scan showed diffuse colitis which is a progression from the skip lesions seen last time. :( Been fighting this flare for 3 weeks. Took some iron pills thinking my fatigue was an anemia relapse, and also thinking maybe I could handle them now. Nope. Instant flare, been losing blood every day.
The emotional shock of Thursday made it much worse. Tried to work Friday but friends took one look at me and suggested I go home/hospital. Went home early, tried to manage it on my own still with no luck. Lost 7lbs this week. Morphine as usual wasn’t enough, so they hydromorphoned my ass. Thank. x_X
Bentyl hasn’t been enough to manage these cramps, they’re so intense. Doc didn’t wanna discharge me yet but also didn’t want to admit me since I’d have to be transferred to that awful hospital far away again. She took the time to talk to her colleagues about how they could help. Love her for that.
Rx’d Levsin (hyoscyamine) which is new for me but apparently better for acute flares than Bentyl. She also made it sublingual, remembering my intense nausea and that swallowing anything triggers the cramps. Most docs forget and try to give me pills. Gotta call GI first thing in the morning.
When I got home I started shaking really bad. Hadn’t eaten anything, barely tolerating water. Managed to sip a gentle smoothie and medicate a little. I can’t move too much. Probably can’t sleep tonight. But grateful I got cared for. Home safe in my bed. Gonna be yet another month of recovery.
I woke up this morning with severe abdominal pain and nearly fainted twice. I was rushed to the hospital and spent up to 6 hours in the ER. Found out, I have colitis. This is very new for me and quite overwhelming. I have also been in the process of moving, and it is taking a stressful toll on me.
