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[the-chronic-potato]

Update - 4/11/17

So I FINALLY got my Humira starter set on Thursday, despite the pharmacy giving me the run around for several weeks. A nurse came out to my house on Saturday to provide injection training. I did all four pens by myself! I didn’t feel the needle at all, but the medicine STUNG. The first and last shots were the worst, but that might be due to nerves and the shakes. But I did it!!! I also saw my GI today, and he told me that I can FINALLY start getting off of my prednisone and Entocort in a few weeks! Yay!!!!!

[strugglefortheair]

[pricepropharmacyca]

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[empoweringpts9]

REALNESS: Let’s talk appearance. It’s been on news overseas lately and is regularly on my mind anymore. I have an extremely important event coming up, and it continues to bring this topic to the forefront. Every single day I think it can’t be worse, but it does. My hair is falling out soooo fast that it’s crazy. I don’t know what pants will fit me from day to day, and shirts are just the same. I’m still exercising and all, but nothing is changing for the better because the roids and such are still in my system. Between the disease pain, the pain on me from this swelling pushing my painful areas, and the mental pain, my appearance is a struggle. I don’t even know what dresses fit or not anymore, for the important event, and I’m not going to buy more not knowing how my body is going to be next week. I’m trying to figure how I’m going to handle seeing people that are going to talk with me and haven’t seen me like this too. Watching my hair fall out when I’m doing everything possible and I’m supposed to have flowing hair, is hard to deal with. I literally pick up wads of hair throughout the day. I’m taking biotin and vitamins. Just last year my Drs and hair girl were commenting on how nice my hair was getting and filling in. Not anymore. There’s not enough contour in the world to hide these roid cheeks and chin, or belly or... I won’t even let my friends see me like this. How do you deal with these types of situations? . . . . #IBD #DevilsTicTacs #mentalhealth #cheeksfordays DYNAMO #MoonfaceForDynamo #ShowMeYourMoonface . (In photo: me circa 2009, Late October 2014, Early March 2018-bigger since photo). . . . . . #inflammatoryboweldisease #IBD #crohns #ulcerativecolitis #colitis #INDcolitis #IC #inflammatorydisease #ostomy #ileostomy #colostomy #crohnsdisease #autoimmunedisease #makeup #photography #prednisone #entocort #corticosteroids #devilstictacs

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[livingwith-aih]

so I know I haven’t posted here in a while and I’m probably gonna make a post soon kinda reviewing the last year but for now I have an update that really bothers me

so I’m an outpatient at the university hospital where I get treated for my autoimmune hepatitis and it’s been bothering me for a while because it feels so unorganized and you just feel anonymous in this mass of patients, appointments were only possible tuesdays, I could never really reach my doctor because that’s not how it works at the university hospital, you had to rely on them calling you, and it was always said “oh yes I will call you when your lab results come back and something is not normal” and then I would wait for the call and it never came and I never really knew if my lab results were okay or if I was just forgotten? anyway I just didn’t feel properly cared for there recently and then on top of that I haven’t really seen my doctor for my last 3 appointments because she always had emergencies and she sent me home with a prescription and then this week she was sick and then I learned she isn’t coming back at all because she is on parental leave next year?? 

so yeah I had my appointment with this other doctor this week and he wants to put me on a budenoside medication (I think the american version is entocort) so he makes me this whole new medication plan and I was taken by surprise since I have never heard of that medication before and why did my other doctor who I have been with for years never once mentioned it? this whole situation left me so confused and conflicted that I didn’t even get to ask any questions and he sends me home with the new med plan and the prescription and I’m just like??? here is this new doctor I have never seen, who maybe skimmed by file a few minutes before seeing me and decides to change my medication that has been working (mostly)?? 

so now I’ve done some research on budenoside and while it sounds good how it works and that it is locally and doesn’t have the same strong side effects like prednisone, some things have me really worried, especially the side effects that do occur and how it will affect my blood levels? I don’t know what to do, I got the budenoside already but I haven’t taken it yet because I feel so confused and lost since I don’t have a doctor anymore? like I can’t go anywhere if I have problems with it or ask someone questions? also I don’t want to take new medication which I don’t know how they will make me feel right before christmas? this whole thing with the university hospital is such a mess. I mean I do have an appointment to have my blood checked next year but not an actual appointment with a doctor, so how can I know that he will actually call me to talk to me about my results? oh man I just don’t know. maybe I will wait until the new year and ask my GP what to do and if he can refer me to a gastroenterologist... 

does anyone has experience with budenoside/entocort with autoimmune hepatitis? 

[mtariqniaz]

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[fuzzynuggetdispenser]

I guess my little situation could use an update. 

Went to the emergency room on Thursday on my GI’s recommendation because I woke up with such agonising pain in my right leg and hip and left ankle, as well as milder pain in my chest. GI thought that if these really were the side effects of the budesonide they should’ve been gone by then because I’d been off the stuff for over a week. 

X-rays were performed, had tonnes of blood drawn, had to stay overnight, received an iron infusion the following day, then discharged. Conclusion? Who knows. The doctors aren’t pinning it all on the budesonide and my joint pains are potentially just plain old UC symptoms. It’s a hell of a coincidence that I developed these joint pains while taking budesonide though... Well, I’m on regular prednisolone for a few weeks to calm the swelling and pain in my joints and I feel so much better. I’m actually optimistic that I’ll be able to work come November. I’m so ready to resume life again. I’m not sure when I should return to the gym and resume Bret Contreras’ Strong Curves workout plan. I looked at my butt in the mirror earlier and damn near cried from how much less round it looks since I started flaring lol.