Sorry I’ve been a little m.i.a. These last few weeks!
(Headed to my first stelara infusion - it’s amazing how many times I hear "but you like like you’re fine! While I appreciate that😉 a little makeup can go a long ways to cover up the way someone really feels.)
I had quite a setback with my medication which in turn made my crohns flare up more and to be perfectly honest just getting out of bed and getting a shower is exhausting most days...I’ve had a couple good days here and there and it gives me such hope and then the next day I’m back in bed the whole day...yesterday I was bored...I’ve been bored ALOT, when you’re this tired anything other than watching tv is about too much. but I decided to try doing one of my little workout routines, just one simple one and not even 20 minutes later I had such terrible stomach pain I didn’t move the rest of the day😕. So as some would think oh you could still write your blog etc, I generally don’t have the creative energy to even do that! I’ve worked on this post a little bit here and there when I have a small burst of enough energy to get out how I’ve been feeling, etc.
Health journey update...
It has been 8 months since I was diagnosed with Crohn’s.
In some ways I feel I’ve come far and in others at a standstill or even 10 steps backwards...🙄.
Since being diagnosed I have been on steroids about 7 1/2 of the 8 months - 2 different kinds, prednisone and one called entocort (it’s supposed to focus mainly in your intestines rather than your whole body, also much less side affects) but alas I’m back on the prednisone...
The first biologic I was put on (Remicade) my body built up antibodies to and it is no longer working.
I ended up having an arthritis like flare up with inflamed and very painful joints due to the remicade - after seeing a Rheumatologist he’s sure that it was the remicade and not necessary from the crohn’s so that was a relief! Granted generally arthritis like symptoms come along with crohn’s it looks like I won’t have to worry about that for awhile😊.
My parents always said I was stubborn...clearly my body likes to be difficult! My Dr. said he’s never seen someone react so quickly to a biologic, it usually works a few years for someone before their body rejects it.
Last week I had my loading dose of Stelara in the form of an infusion. I’m happy to get started on something that hopefully works as at least the last two remicade doses I had didn’t work so basically the only thing that’s keeping me as well as I am right now (which isn’t that great😩) is the prednisone, I’ll go back April 9th for my first injection of the steroid and they’ll actually teach Joe how to give me the injection because let’s face it, I hate needles and I’m not about to poke myself with one😂 he’s not crazy about giving me the injection either but he’s being a good sport. The nurse told me while getting the infusion most people don’t start to notice feeling better until the first injection so that’s a bummer since that’s another 7 weeks away, but from research we’ve done we’re very hopeful that the stelara will work well!
I’ve had a lot of people ask me what exactly crohn’s is or what I can eat so here’s a little info on it...
As far as eating -
Right now I’m on a low fiber diet - This generally is only until I am in remission and then I can slowly add in foods (They say when you’re in remission you can eat anything you want, I’d love to be able to eat popcorn again😉).
I use the MyFitnessPal app to track my food and water intake everyday and have it customized to my needs - My goal is 10g or less of fiber a day, higher protein, lower fat and sugar, and at least 100oz of water a day.
Most of you probably don’t realize how much foods have fiber! I sure didn’t, and of course for most people it’s a good thing but definitely not for me.
For example, I was looking at bagels the other day and ONE bagel has 4g of fiber! For me that’s definitely huge...not to say I couldn’t have one, I would just need to adjust the rest of the meals for the day.
I also can’t do anything with seeds or skin, I can still do potatoes but no skin, I’ve even tried green peppers but peeled them just like a potato!
Really no nuts, fruits, or veggies, some veggies like carrots if they’re cooked very well so they’re soft enough to digest.
Absolutely nothing greasy or spicy (Ok this one does make my heart sad😩 I love a good spicy sandwich, Mexican, and a deliciously fried tenderloin...but...I’ve learned it’s not worth it - very often at least😉). We bought an air fryer last week and it’s been the best investment EVER! I had my first tenderloin in almost a year and it was so delicious 😋, oh the things we take for granted..
To be perfectly honest it’s been a lot of ups and downs the last 8 months - Definitely an emotional rollercoaster!
Through all of this I was tested for celiacs (thankfully that was negative) and had a liver biopsy to find out if I have liver disease - still waiting for those results.
The day to day never knowing how I’m going to feel is tough...I’m learning stress has SO much to do with how I feel...if something is making me feel overwhelmed or stressed out I’ve realized it’s ok to remove myself from the situation or cut back in the social activities (I’m still learning...it’s going to be a long journey), for example when I did our Christmas Baking two full days in a row I was sick in bed for two days afterwards - Learning the art of balance is so hard! Even for someone that doesn’t have an autoimmune disease.
Being stuck inside so much certainly doesn’t help not feeling well (but I do think the snow is so pretty, mainly because I never have to drive in it😉) so I’m really looking forward to spring so even if I’m stuck at home I can get some sun outside with the doggies!
I read an article today talking about the "5 things I wish I’d known before my chronic illness" and boy was every point so true!
If you’re interested in reading and getting a better understanding I attached it.
https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html?fallback=0&recId=1HOzfUelBXwRfqi5lhg4K62GjYk&locked=1&geoContinent=NA&geoRegion=NY&recAlloc=home-desks&geoCountry=US&blockId=home-living-vi&imp_id=312105790&action=click&module=Smarter+Living&pgtype=Homepage
I was also talking to my cousin earlier today and she said she hoped I get back to normal or my "new normal" and that is so true also! It’s been soo long I have no idea what a normal will be like when I’m actually feeling better but I’m so hopeful...I still struggle so much with over doing it I’m thankful for a supportive husband who’s main goal is for me to rest which is so much needed.
I know I’ve bragged on him before but I am so thankful for him, his love, and how serious he took our vows 7 1/2 years ago, you would be shocked at how many people have said to him "I’m surprised you’ve stayed, most men would have been gone a long time ago" yes multiple people have said things like that to him! It makes me so sad that those haven’t gotten to experience a "true love" like we have, I’m not trying to brag about that but so thankful that I know we would both be there for each other in sickness and in health, I’ve showed him that in years past when he’s struggled with things and he has certainly shown me that the last several years but especially since I was diagnosed, I feel so terrible but also so grateful everyday when he comes home from working 10 hours and goes right to work cooking, cleaning, taking care of me or the dogs or whatever else needs done and I’m telling you I never hear a complaint out of him for it! He has truly been my rock through all of this especially on those bad days when I just need him there for me.
Something that sounds so crazy but she totally understands 😉 one of my best friends I’ve had since we were 4 has ulcerative colitis, she also lives in Wyoming, we get to see each other every few years and we always talked every few weeks or so and stayed in touch before but going through this process together has brought us soo much closer together! Not that either one of us is happy the other is going through what we are, but we’re both so thankful to have someone that understands the day to day struggles and we can talk or vent to each other about it.
All in all I’m so thankful for my family and friends who have been so supportive whether it’s prayers, cards, well wishes, etc we truly have such a HUGE support system and it is so amazing!
God is good and when I’m having a hard time, he always finds a way to bring me out of it and provide!
That’s all for now, I give you lots of credit if you made it through this whole post, it’s a long one😂
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