Consultations and Remicade Infusions

I’d like to start by saying thank you to all the welcomed followers who read this blog weekly. I know some weeks can be chaotic and others can be slightly boring, so every view is appreciated.

Like many other weeks, this week had its ups and downs, it’s events and its issues, the good and the bad, all rolled into 7 days of blah.

I began the weekend with dizzy spells, and a feeling similar to that of a heavy night of drinking that leads to the spins. You know, the feeling where the more you try to gain control, the more you spin out of it. It was recurring and it was making me so sick to where I had to sit down at times for fear of collapsing.

The Gabapentin, the nerve pain medication, was causing me to almost black out, with the prescribed 300MG 3xs a day, so with a phone call to the father-in-law, we lowered my dose to only once a day. He was shocked I had been prescribed such a high dosage, and said that it takes ages for him to prescribe a dose that high.  I have since taken it only at night, and the sharp pains in my breast have gone down in occurrence, but the side-boob still remains tender to the touch.  It’s so odd.

To Do: Mammogram and Remicade

When I went into the VA Tuesday, I had to meet Primary Care to see about my chest.  My doctor gave me a breast exam and continued the referral to General Surgery for a consult, and they added a pneumonia shot since I was already there.  Ouch.  I got a nice selfie before I had to disrobe and let the doctor “feel me up”.  She thought me saying that was outright hilarious.

Because General Surgery will not see me unless I have a mammogram first, I will have a mammogram and a breast ultrasound scheduled in the upcoming weeks. Something has to explain the sharp pains, right? Nerve pain didn’t just show up, did it?

Since the VA doesn’t offer the mammogram or ultrasound at the Lexington location, I will have to use the Veterans Choice program again and have my appointment elsewhere. This means more paperwork and a third party being involved in the appointment, much like the Double Balloon I had in August. I will more than likely have them done in Georgetown, which is conveniently closer, but it could take a minute longer to schedule the appointment.

The Veterans Choice program already called me to clarify my care preferences for both the mammogram and ultrasound, and for the General Surgery consultations; preferences, I have none.To Do: Mammogram and Remicade

After the breast exam, I immediately had my mental health appointment and therapy session next door.  This doctor, Dr. C, is a very nice older man who lets me vent for an hour and tries to help me de-stress from everything occurring in my life, medically, emotionally and physically.  The appointment went well and I didn’t cry this session! Before getting a ‘permanent diagnosis’ of depression, anxiety or the like, I will see a psychiatrist, another consultation needed, and Dr. C suggested coming to a group therapy session that the VA offers. We shall see…

To Do: Mammogram and Remicade

Since I did not speak with GI last Friday, I attempted to call Dr. S on Monday, on Wednesday, and again on Thursday. She is a busy woman! She had sent out for my infusion consultation on Monday, and she had intended to call me back with more information, but I assume she got busy.  Wednesday, the same story.  I called but she did not return my call,  again.  And then by Thursday, she was in a meeting all afternoon at the VA, so I wasn’t getting through to her, but finally Joanna from GI called and said the infusion center would be calling me, and that my stool and blood tests had come back.

My Crohn’s issues this week have been extra active.  I have had constant issues, I blame stress, and I continue to vomit, even waking in the middle of the night to puke bile.  That’s definitely fun to wake up toI’ll spare you the other fun photos I take for the doctors.  The prednisone is making me hungry, I ate a pint of ice cream one night and then I threw up that pint of ice cream, but we are sad that I am still having puking fits and the Prednisone hasn’t helped that.

We have thought maybe my cocktail of daily medications could be inducing the puking and nausea, meds working against one another, but in order to know, we would have to cut off everything and add things back slowly.  I think I’m on too many regimens to stop them all at once. I don’t want any of my ailments returning or getting worse.

And now, for the Remicade.  The infusion lab called me to schedule my infusion this afternoon.  My first of the three loading doses will be the day after Thanksgiving.  That makes a week from today.

Crohn's Remicade infliximab:

It’s somewhat intimidating, and yet, it’s exciting to think my body won’t hurt, that I won’t have so many issues and that I can eat my favorite foods again (read: hot sauce and ice cream. Not mixed, of course).  The nurse told me to prepare to be there a few hours, so I plan to bring a goodie bag of things to keep me busy and warm, like my crochet items and my Bengals snuggie.  I am slightly eager to bring and use my Rectum pillow, just so I can say things like “Who brought the asshole?” or “The asshole’s with me.”  I am hilarious. Ha.

Considering that may mean my infusions will always happen on a Friday, respectively, I may have to change my blog post days to Thursdays, or just post a day early for those occasions. We will see.Image result for remicade side effects

The loading doses for Remicade are given on week 0, 2, 6, and every 8 weeks after that.  If this works, I’ll get around 6 infusions a year, and I could be out into remission as early as a few weeks. Now, I will probably have size effects, and I will probably feel bad days after, at least for the beginning, but we are extremely hopeful this medication mixed with my Imuran booster can bring me some relief.

To Do: Mammogram and Remicade

I re-colored my hair this week, and I finished yet another week of class, with 1 week until I complete this capstone course.  I reordered some migraine meds, to prepare for the hectic week ahead, and we put out Christmas decorations and lights.

We go into this next week hopeful and thankful because It Could Be Worse.

Thank you for reading, and for keeping up with My Crohn’s Journey.

Please Like It Could Be Worse on Facebook for Updates!

And as always, any information you’d like to offer up about Remicade infusions or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!

For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds We raise will be allocated to IBD research for a cure. That’s right, 100%!

To Donate:

www.cureforibd.donordrive.com/campaign/icbwblog

Previous Posts on It Could Be Worse:

ER Déjà Vu & Veterans Day Weekend

Chest Pains & ER Visit #3

No More Humira for Mary

Not only can my blog be found at MaryMHorsley.com but it can also be found at ItCouldBeWorseBlog.com !!

More Info On Crohn’s Disease at:

www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com

8 thoughts on “Consultations and Remicade Infusions

Add yours

  1. Hello,

    I signed up to your blog a while back, and I am getting better about checking in in each week. You have a lot of amazing things to say and you are very brave for going through it publicly. Thank you for sharing your struggles and achievements, I think it’s a positive thing for anyone living with IBD.

    I feel your pain as I have crohns too. I was diagnosed when I was 19 and now at 40, I have been through many different types of treatment. I was on Remicade for a while, but I didn’t respond consistently for very long, but I hope that is not the case for you!!

    Currently, I have been able to maintain my symptoms with diet and holistic treatment and I am grateful for that, I reached out to an acupuncture clinic years ago and it has really helped. I still have good days and bad, but mostly good and I will take it.

    I just thought you might be interested. I know you aren’t in Colorado, but the clinic I am going to is called Harmony Healing in Cherry Creek, Katherine Kummer is the practitioner. If you aver wanted to learn more, please feel free to reach out.

    Otherwise, good luck with your journey, I hope Remicade is your answer! I have faith there will be a cure one day!

    Peace, Nate

    Liked by 1 person

    1. Oh my, thank you for reading and sharing! That’s so kind of you. I appreciate the kind words, and I am glad you have found your own means of relief. I know the struggle and finding any information online is hard. Thank you for the heads up and contact, I think any information is helpful and who knows, maybe I’ll find myself in Colorado someday! I’m hoping the Remicade does more good than bad, but I’ll let everyone know how it goes. 🙂 Thank you again and I hope you have nothing but good days! – Mary 🙂

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  2. I’ve been on Remicade for many years now, it seems like forever I guess, but it was the best thing my doctor ever did, it eliminated the 16 pills I took daily! I usually arrive at 8am and by the time they weigh me and get the medication mixed I’m usually out of there by 11:30-12…I’m lucky, the hospital where I get it administered has a room full of recliners with tvs, they give me a blanket and headphones and i’m good, except if I fall asleep, bc the blood pressure machine goes every 15 mins, as does the machine alerting them to up the dose that’s going! lol. I never have any problems the day I get my infusion, ive been able to do all my normal things that day! good luck, hope its as good to you as it is to me! 🙂

    Liked by 1 person

    1. I really hope the Remicade works and I can cut back all the medications. I am glad it has helped you find relief! I know its a struggle to find. I’m not sure what the VA infusion center looks like, but I’m sure I’ll take loads of photos. I’ll definitely bring my headphones and a charger. I’m glad its helping you, really, and I look forward to feeling better! 🍀

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  3. This is amazing news that in just one week from today you’ll start what hopefully will be the key to you feeling better! I’m so incredibly happy for you! You thanking the dr for “Feeling you up” on the way out the door had me cracked up. You’re one goofy lady 😃. That’s crazy the dr started you on such a high dose of Gabapentin. Trust me, I know that feeling from that medication. Lol. Anyways, next week is going to be great! BBBC sisters for Life!🍋

    Like

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