This week has been slightly busier than usual and nothing really went as planned.
We had another epic Halloween this year, with 2 of 3 parties attended so far, (one more to go for this weekend, hopefully), and I felt well enough Friday that we didn’t have to bail. We had originally canceled our Halloween events, but I didn’t feel as bad as last time. Shocking, no chest pains after Humira #4. Hallelujah for no Friday ER visit.
Monday, I finished my last communication class and I began my capstone course this week. 6 more classes until I will finally have my Bachelor’s degree with a Journalism certificate! I am so ready to be DONE.
The rest of the week was slightly more chaotic, with 5 appointments to attend, if you count blood draw, too. Here is what should have happened with the schedule, as you may have seen on Facebook this week:
* 10:40 GI – 3 Month Follow-up for Meds, ER Visit, CT Scan
* 3 PM MH – Mental Health – Meet New Therapist
* Blood Draw Due – Kidney & Liver Panels
* 11:40 Dermatology Follow Up
* 2 PM Neurology Follow Up for Migraines
As you can see, I was supposed to be busy-busy this week.
Tuesday’s first appointment, the GI clinic. This appointment was set up to discuss my emergency room visit, the CT scan I had, and the Humira causing me pains. I went in and seen Dr. S, my GI doctor, and she agreed with my Humira representative that the Humira just wasn’t/isn’t working for me.
Side note: I had felt fine the majority of the morning on Tuesday. Other than my usual symptoms, I began having back pains out of nowhere. By the time I got to the GI clinic, I could barely lean forward or stand up without holding my back to support it. Even just stopping the car at a red light or stop sign would pull my spine with gravity and it caused extreme pain.
My GI doctor even commented about me walking funny, and I had to tell her I was having crazy back pains. She tried to chalk it up to my fertility drugs, but I have not taken those in a year. I blame Humira since it happened with the last injection, too.
Looking at my CT scan from the ER visit, my inflammation has gotten worse. It has gone from just small bowel Crohn’s disease, to small AND large bowel Crohn’s inflammation, making my bowels that much worse since the previous CT scan in August. The Humira has not helped me find any relief, it has only caused severe side effects for me, back pain and chest pains, and since normally GI patients start to feel better by now, week 7 of treatment, it was in my best interest to look for other options. (See Emergency Room & Crohn’s Inflammation).
Dr. S., Philip, and I discussed other Crohn’s biologic treatments, with Remicade infusions, Infliximab, topping our list of options.
Remicade infusions are exactly how they sound, scary. Trust me, just saying it makes me nervous, too.
When we begin this treatment, I will have to go in every so often, on average 8 weeks, to get 3 hour IV infusions with the rest of the Chemo patients. I’d begin by getting a loading dose on week 0, week 2, and week 6, and every 8 weeks after. This medicine would make treatment easier, in that I would only get 6 a year or so, but like the Humira, it can cause some major side effects and problems, too, like rare cancers, or death. Damn biologic drugs and their side effects. I just want to feel ‘normal‘ again.
We did mention surgery during the GI visit, wondering when does that become an option? Dr. S said if we wanted a referral to a surgeon, she would give us one, but with multiple locations of my Crohn’s disease causing issues, bowel resections and surgeries become that much more difficult, and it is not a cure-all, either.
For now, since I have only been on ‘real’ treatments for a few months, surgery would be considered elective. If after I begin Remicade, or I continue to suffer or heaven forbid I get worse, then we can look into cutting it out, but a colostomy bag would probably be needed. We will cross that bridge if and when we get there, but at this point, I’d go for surgery today if it gave me immediate relief.
But for now, Remicade is our new plan. And since I’ll be going in for infusions soon enough, I’ll need a pillow. So, I bought myself a new one…a Rectum pillow, to be exact. It only seemed fair since they cut parts of mine off. Not even kidding, I am so excited about it.
Instead of going to blood draw after the GI appointment to get my biweekly liver and kidney panel, Dr. S suggested I wait until Thursday to do the blood draw because she was going to order up a different set of tests before prescribing the Remicade. I would still take the immunosuppressant booster, Imuran, so I could possibly feel better in a few weeks if all goes extremely well? Fingers crossed!?!
Dr. S also started me on my first dose of steroids, Prednisone, because I have had not had relief in almost 3 years and I have been vomiting since August and getting worse. I have also lost 17+ pounds since January. No good.
But, on a positive note, another colonoscopy is not needed. At least not yet, anyway. Silver lining?
The steroids, Prednisone, it should give me some immediate relief but it adds 4 more pills to my daily intake, I’m up to 10 pills now, not including my migraine or nausea medicine I take as needed. The downside, it can cause insomnia, something I already have issues with.
But, the steroids, they are not a long-term solution. Taking steroids like this can be dangerous long-term, leading to prosthetic surgeries, joint problems, weight gain and a handful of other ailments. But for now, they should help me start keeping my dinners down and help my bad bowels to relax a little bit.
Dr. S told me that once she received the blood tests back after Thursday’s blood drawn, that she would be returning my call Tuesday, no later than, since Wednesday would be Humira number 5. I will not be using the Humira anymore.
I still have 4 Humira pens in my fridge, and I even called about returning them to the Pharmacy, seeing that they’re a very expensive drug, $10,000 worth, and not even the box is open, but they told me I will have to throw them out. It’s making me sick to my stomach, I wish I could give them away and save someone some major money.
So, instead of going to blood draw Tuesday, we skipped that, and since I would start on steroids that next afternoon, I had to get a flu shot after the GI appointment. Funny, Philip said it hurt, but I felt nothing. I must just be used to injecting in my stomach, a very different pain.
Reminder: If I ever see you in person, get your flu shot this year. I cannot get sick with my already weakened immune system, and I’d rather not wear a face mask around you… and greeting sick could kill me, so there’s that, too.
I met with my new therapist for the first time on Tuesday afternoon, a Dr. C. I won’t disclose much of that appointment, maybe I’ll write about it soon, but I will tell you that I suffer some PTSD.
I suffer PTSD from childhood traumas, I suffer PTSD from my military sexual assault that I’m constantly being reminded of, and I suffer PTSD from all of the family related drama, but we won’t get into all of that. Stress, stress, and more stress, to say the least.
I suffer from flashbacks, severe anxiety, depression, and, emotional distress. I have to cut those memories and some of those people out of my life to better help me. I cannot control it, or what happened to me, but I can control how I handle myself and what I will allow in my life. I have to come first in that sense, the stress is NOT good for Crohn’s disease or any other issues I have.
I will begin seeing my new therapist once a week, so venting and talking to someone, other than Philip and my bestie, will hopefully do me some good and clear my mind. On a good note, though, he didn’t think I’m crazy, contrary to the unpopular belief. So there’s at least that.
I made dinner Tuesday night, barely, and of course, I vomited that up too. Imagine vomiting and dry heaving with back pain… everything radiated in my spine. I continued to have back pain for the rest of the evening, so bad that I was in tears and went to bed early.
I even got a little upset with Philip because he offered up a walking stick because I was hunched over and I could barely sit or stand without really struggling. I was not amused.
Wednesday came with more back pain, causing me not to sleep well. I did not sit down more than a handful of times the whole day because I avoided using my back as much as possible. I cried out in pain every time I tried to sit or stand, so making trips to my office (read: bathroom), it only induced more pain.
By Thursday, yesterday, my back pain was minor, but I still slept miserably. I woke up Thursday morning with every intention of going back to bed. Philip had to remind me that I was scheduled for two doctors appointments and I about broke down in tears. I did not want to do anything. Side note: I did not get a nap in, anyway.
Having done a little more research on Crohn’s, I figure my skin issues have to be Crohn’s related, and I knew Dermatology was not going to do anything to help my skin. I have been dealing with it for as long as I’ve been dealing with Crohn’s, so I canceled that appointment and just requested more medication and body washes.
If my skin doesn’t get better when I start this new medication, Remicade, then I will schedule another appointment to see Dermatology. There was no need for me to go in for them to tell me nothing, to not do biopsies, and to not give any solutions.
And the same went for Neurology. Since I have been taking the Nortriptyline and Fioricet, my migraines have significantly gone down in occurrence, to only a few per month. I am pleased that I am not suffering from migraines the majority of the week anymore, so I also canceled the Neurology appointment, too, and told the nurse that my medication was doing the job. So I did not need to go in for them to tell me nothing, either.
So instead of running around like a madman to a bunch of appointments on Thursday, I only had to go give blood for GI.
When I went to give blood, I get deja vu because I’m at the VA so often. I asked the nurse a handful of times which tests were being done. I knew it was originally set up to get a liver and kidney panel, but I wanted to know what new tests were being ordered because I want to know everything. The nurse did not tell me anything other than ‘she ordered a lot of stuff’. So, he was not very helpful…
I will have to wait until the results are available on my patient portal online to tell you what blood tests were ordered, it could be a day before they are available, but it could be next Tuesday before I hear back…
* And before I could even finish this post, I got a call back from the GI lab. Dr. S thought that my Humira was due this week, but she was a week early. It was blood test week, not Humira week. I will have to go back in on Wednesday of next week, what would be Humira #5, to get blood drawn that day, again, to test before more biologic medications are ordered.
The blood taken yesterday (Thursday) are no good because you have to get the blood drawn on the same day your Humira is due, to check for resistance to the meds, but, thankfully, I don’t have to do another injection that day, too. She originally wanted me to do another Humira injection, but since I have had major side effects, I’ll just get blood drawn, again, and wait for the Remicade to be prescribed.
I made a lasagna for dinner Thursday, the first time I’ve made it in a while. Bad idea. Then had ice cream. Even worse idea. I got to throw up both. I want food, any food, but throwing up everything is killing me and makes me not want to eat. I wake up in the middle of the night, puking bile because my stomach is so empty. Ugh.
And that has been my week so far:
Out with Humira and in with Remicade infusions. Out with Dermatology and Neurology appointments, and in with some steroids and a flu shot.
A new therapist for Mary, and lots of research to do about my new treatment plan. Blood draw was done and a repeat blood draw is due.
The Mighty shared another post of mine, (with over 2.6K+ shares now! Woot-Woot!) and I have been asked by other sites to share my stories.
I spoke with the Red Cross about internships and volunteering, since my background check finally came back, so interviews are in the works.
I took a lot of photos and selfies this week, and I am beyond grateful that I don’t look as bad as I feel and that there are people who genuinely care about my well-being. I care about you guys too!
Crohnie’s really are the best.
In all, It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey.
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And as always, any information you’d like to offer up about Humira or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
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