Finally, an update for all of you who were wondering what happened with that Double Balloon Endoscopy and this weeks GI visit. I’ll assure you, it was eventful. (See Frankie, Myrtle, and the Double Balloon)
Last Thursday, we drove the 2 hours up to Cincinnati, to drop off Bilbo at Grandma’s house (thank you for pup-sitting!) and Philip had dinner with his mom while I had my liquid diet of coffee.
After they had dinner, we drove another 2 hours to Indiana, I got a UDF milkshake on the way, but we had to stop so I could puke before the interstate. Go figure. If you never had one of UDF’s milkshakes, I am sad for you.
We spent the night at a hotel in Indy, right by the Lucas Oil Stadium, to prepare for the double balloon the next morning, and so we wouldn’t have to leave super early from Georgetown or leave the pup alone all day.
With no food for Mary and no liquids beyond midnight, I was ready for the procedure to be over by the time the night came. It’s difficult remembering you can’t have anything when all I want is food or water and especially in the morning when I’m missing my coffee.
We got to IU around 9am Friday after Philip ate breakfast at the hotel and I complained of hunger some more. We checked in for the procedure and we waited to get called back into what would be ‘my room’ for the day. I was happy to wear my Cure for IBD shirt because I knew the long sleeves would be a good idea for the cold hospital.
Before I was taken back, I noticed a missed call on my phone from the VA in Lexington. The MSK Occupational Therapy office had been moved, and with the move, all of the scheduled appointments were ‘lost’. This meant that my Monday appointment was canceled. (Pretty convenient for it to happen the day before I get my shots…).
I was told I would have to wait until Sept. 26 until I could be seen, ANOTHER month of dealing with hand pain, carpal tunnel and DeQuervain’s. Just great. The nurse suggested calling back every day to see if I could be squeezed in, because she said she ‘didn’t mind’ looking it up for me. Well, I wouldn’t mind if my appointments were kept on schedule. Same same.
Back at IU, I was given another medical bracelet to add to my collection, so that makes me happy at least. You can see the bruising on my hand from the IV’s and needles in the ER visit on Monday.
I was taken back to the prep area and given a lovely green gown. Even though they were entering from the top (mouth), I had to wear the gown anyway, trust me, I asked. I was given the 2nd IV of the week, serious déjà vu, and the doctor performing the scope, Dr. M, came in to visit and ask questions.
In her opinion, based on my capsule results, we should have originally planned to do the scope from the bottom (rear entry), and she was unsure if her scope could reach my inflammation. Lucky Mary, my problems are right in the middle. You may not see it with a top down entry (endoscopy), and you may not see it with a bottom up entry (colonoscopy). Either way, there’s a chance this double balloon could be a waste of time, but Dr. M stated she would try to get as deep as she could. (That’s what she said!)
I was gurney-ed out and down the hall, and the next thing I know I was getting light headed and that was that. It seemed like moments had passed and I was being woken up, my throat extremely sore from the tubes and the scope in my throat. I vividly remember begging for water, to which no one would give me.
I had been given a new gown in my unconscious state, too, because I was told I’d had an accident; the details, I didn’t ask. This time, the gown was blue. I figured people would notice the gown color difference in my before and after photos, so I figured I might as well put it all out there.)
Note: A cat-eye and a full face of makeup are not needed for scopes or procedures. I woke up looking like a panda bear, with eyeliner circling around my eyes. I looked a mess, for sure. Dammit. If I feel bad, I don’t want to look bad, too.
When I woke up completely, (if you’ve ever had anesthesia you know what I mean, you wake up and go back to sleep a few times before you get completely lucid), I woke up in some gut wrenching pain. The air that is pumped into your stomach, and the scopes moving around for over an hour is no joke; it is extremely painful, for days after even. I was given pain meds and meds to help stomach irritation while I was in the wake-up room, and I was finally able to have some ice water.
I was sent back to ‘my’ room with Philip and we waited for Dr. M and her findings, if any. And, come to find out, the top parts of my stomach look great, if not ‘normal’, and she did not reach the inflammation, what she had originally guessed would happen. I felt like crying or screaming, or both.
Since the VA had somewhat been waiting on this scope and biopsies to finally put me on stronger Crohn’s medications, I didn’t know what to do. I was seeing them in 5 days. Maybe they would look at the capsule results instead.
Dr. M assured us that she was a digestive specialist, as well as Dr. B, and that in their minds, there was no doubt about my Crohn’s, considering my issue history, the abscess, and the fistulotomy. She insisted that the VA did not need a biopsy before giving better medications and that my capsule results should more than suffice for Tuesday’s visit.
I was given the normal discharge paperwork and we headed back to Cincinnati to get our Bilbo.
We stopped for lunch, and I was so starved (remember I’d been throwing up for past 2 weeks, too), so I ordered onion rings, fries, a cheeseburger, and chicken strips. And another milkshake. I ate what I could, although nothing was as good as I’d hoped, and I slept the rest of the car ride. This was the first real meal I didn’t puke in 2 weeks!!
Once we got Bilbo and got back to Georgetown, I was useless. We got KFC drive-through on the way home so I wouldn’t have to cook, and I didn’t even eat it. The pain meds were wearing off and my insides were not friendly. I curled up and fell asleep on the couch.
Saturday and Sunday were spent in my office (the bathroom), and on the couch again. I spent the entire weekend holding my stomach in pain. My abdomen gets so tender that fingertips or a light touch hurt tremendously. Any sort of pressure was too painful.
Philip cooked dinner for us and I was pretty much useless until Sunday evening when I had to get up and do homework. I’d been keeping random meals down and throwing some up, and my insides kept having spasms that I wouldn’t wish on anyone.
Monday was another homework day, and Tuesday I met with the new GI doc, Dr. S.
This visit, we did not see a student at the VA, but she is a ‘higher up’ doctor. We met Dr. S and we got to tell her everything we knew. We explained to her my entire 2+ year Crohn’s Journey and what every single doctor had told us up to this point.
We shared with her that doctors we have seen for non-GI related issues had suggested Humira (or Remicade), that all of our primary care physicians had suggested Humira, that the Indiana University doctors, both of them, they had suggested Humira, and friends, blogs, forums, everything was leading us to Humira, and so that seemed to be the best choice for us to try. If the majority is suggesting for me to try the Humira, then maybe I can expect some relief, too.
After our spiels, Dr. S agreed with our reasoning and our demands and begging for Humira treatment. This could work for me and My Crohn’s.
She explained to us that only 50% of individuals respond well to the treatment, so there was a 50-50 shot of this not working for me. If that were the case, my treatment options beyond Humira are slim. There are only a few things left to try if this does not work, like IV infusions or resections. Fingers crossed I get relief!!
I will be injecting the Humira for a few months, and then we will have a repeat capsule endoscopy to see if my inflammation in the small intestine has gone down. Either way, my life is going to continue to involve scopes and lots of needles. Yay.
After her visit, I was sent to get tests for TB, a chest x-ray, and blood work. (More needle marks for Mary). My results should be back by the end of the week, if not, Dr. S was going to put a note in to call me on Monday, when my results would ‘for sure’ be back.
Once she receives all my results and I am cleared for the Humira, I will have ‘training’ on how to inject myself with the Humira pen and syringe, and I can learn all about this new biologic medication.
I get a new life coach through Humira, I have already received calls to let me know that I will have my own personal Humira ‘cheerleader’. I also requested their cooler for traveling with the medicine and their injection kit; freebies they offer for patients. (See their website!)
I am not certain on whether I will get the Humira pen or the Humira syringe, but watching videos on YouTube leaves me nervous for either. It is going to be a struggle giving myself that first injection, either way. Mind you, I am not afraid of needles, I know some people are, but I have multiple tattoos and piercings, and I have pierced my nose, and my belly button, and my ears myself. I’m more nervous of what the burning will feel like with the Humira injection, I will have to get used to that pain.
I’m almost positive the first injection is multiple doses, I have seen people taking 4 doses at once to help initiate the process, and later people have to take it at different times, like weekly or bi-weekly after that.
With Humira, you address usually given a booster medication, to help it take effect and help you maintain remission, like Methotrexate. What else will I be starting? I’ll get Azathioprine (Imuran), because I’m ‘still young and fertile’. Those were Dr. S’s words, not mine.
I have no other details, other than Humira is my new prescription, so we at least have that to look forward to starting next week.
In addition to starting both of those new meds within the next week or so, I’ll be starting yet another prescription…birth control for Myrtle.
After not hearing back from Gyn or primary care about the birth control drama of last week, I received a cooler filled NuvaRing’s and ice packs today. Considering the birth control can’t hurt, and that I won’t be getting pregnant anyway, I will use them for 3 months and then I can get a check up with gyno if I’m still having the ovary or left sided pain.
That should also be the time I reach my 3-month mark with Humira as well. Come November and December, all of my pain should be gone at this point! Hopefully. Either both issues will be fixed or I’ll have to go in for follow ups at the doctor anyway.
I am drained but I am hopeful, and I am ecstatic that after all this time I am finally being put on a real Crohn’s biologic medication to help with this disease. My body has been hurting more and getting worse for years, so something has to give.
Humira, my new friend, I have high hopes for you, don’t let me down!!
So for now, It Could Be Worse.
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!
Please Like It Could Be Worse on Facebook for Updates!
Thank you for reading, and for keeping up with My Crohn’s Journey. Also on Huffington Post.
More Info On Crohn’s Disease at
www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com
Previous Posts on It Could Be Worse:
Frankie, Myrtle, and the Double Balloon
I’m actually starting Humira for Crohn’s too!
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Good luck!!! 🍀
I’ve been on Humira for two years (for Ankylosing Spondylitis) and, although I moan about the hangover, it’s changed my life. There are a few biologics that can help so if Humira doesn’t work then see if your doctor will look at the alternatives.
As for the injection, it’s psychological rather than actually painful – I opted for the pen as you don’t need to be as precise. As for the hangover, most of the people who I know that are on Humira don’t really get it, but it is a potential side effect. Be careful (especially around children) and aware of people who are ill around you as you might be more susceptible to infection.
Good luck, and I hope that you’re in the good 50%!
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I’ve been googling it like crazy for a day now, but I appreciate the info!! I’m sure I’ll be okay with the injections, I just have to psych myself up for it! Ha. Fingers crossed it works!! 🙂
I’ve had Crohn’s for right around 8 years now and I started taking the Remicade infusions and that was way too much; it was just about a day long process, which in turn would drain me of all energy. But once I changed doctors after going to CHOP, I asked my new doctor about taking Humira and I’ve been doing it for a few years not. While it does suck to do it every other week, it’s way easier and I had to start with the 4 needles at one time but then I got knocked down to 2 and now I do the one every other. I hope it all goes well for you!!
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Thank you for reading and replying! I hope you have felt relief Humira. I am sure I will keep everyone updated as to what happens next week with the first injection and my plan. Thank you and good luck to you!