It was in November of 2017 that I had my last pill capsule endoscopy, with my last colonoscopy just months after that. I had been on Enyvio medication for my Crohn’s disease at the time and I had switched to Stelara in February of 2018.
Since I have been on the Stelara injections for over a year, I feel this medication has helped better than the many other medications I have tried, but I am still not symptom-free.
Since I am still suffering from IBD symptoms and with the addition of a second perianal abscess this past year, I felt it was due time to see what my Crohn’s disease was looking like in my small bowel, to see how my medication is managing my disease, and to see what could be causing me to still be symptomatic.
For my Crohn’s disease, my inflammation is small bowel focused, with every colonoscopy I have ever had coming back “normal”. It took years to get an IBD diagnosis because the small bowel is so hard to see.
A normal colonoscopy will enter your rectal cavity and explore the entire large intestine, also known as the colon, the scope goes into the cecum, and sometimes views the very last portion of the small intestine, the ileum.
Pill Capsule Endoscopy
Because my inflammation is higher up in the digestive tract, in my small bowel, it is notoriously difficult to see and be studied. My Crohn’s disease inflammation location requires a Pill-Capsule Endoscopy instead of a normal colonoscopy. In the past, I have had two pill-capsule endoscopies, to view my digestive system top to bottom, so we could finally view my small bowel and other unseen areas.
Because this pill capsule camera is swallowed, my GI care team can evaluate from my mouth to my stomach, to my small intestine. My prior pill capsule endoscopies have shown inflammation almost immediately entering my digestive system, up until it reaches my cecum and lower small intestine.
There is a battery pack that you have to wear to transmit the images from the pill capsule traveling through your body to the device and the battery lasts about 8 hours until it is completed, no matter where the pill-capsule is located inside your digestive tract. There are chances of repetitive images due to the capsule getting ‘stuck’ in a location, and there is a change of the capsule being lodged in an erosion, ulcer, or a stricture.
Because everyone’s inflammation is different, there are risks of strictures and ulcerations anywhere in the digestive system. This means that the pill capsule may not make it very far, or it may not exit your body. My previous two have both exited my body within a day, although my GI was worried about it getting stuck last time after downloading and viewing the report that same day.
My first pill-capsule endoscopy was in January 2016, with my second in July 2016. In those few months, my imaging reports showed increased Crohn’s disease activity.
The first report showed gastric erosions and multiple ulcerations in the ileum.
The second report showed increased ulcerations and mucosal changes, just six months after the first capsule. This report showed small bowel erosions and other patchy areas of erosions, with ulcerations and repetitive images preventing views of the cecum.
These two reports are the only imaging I have of my Crohn’s disease at all because having a colonoscopy is always suggested. I always tell them what will happen, but they persist, so we waste time and funds and I have to complete the dreaded bowel prep for nothing, every single time.
I have now had 5 colonoscopies. Two endoscopies. Two pill capsule endoscopies. One double-balloon endoscopy. And so it continues.
When I last saw my GI care team, we had discussed how my Crohn’s was managing and how the Stelara was working for disease management. I have submitted stool tests, had the abscess drained, the works. Then the colonoscopy I mentioned above. As always, the prep is the worst part.
I still have recurring symptoms, diarrhea, and blood in my stool. I still have mucosal lining shedding and abdominal pain. My skin flares when my body does and my fatigue gets unbearable. And then I get insomnia to boot, which doesn’t help my body either.
Since I had mentioned these problems and my GI care team know my perianal abscess and fistulotomy surgery history, my doctor wanted a colonoscopy – to look for fissures, abscesses, and anything else. A colonoscopy was the next step, although I did suggest a pill-capsule to prevent wasting time to view no Crohn’s disease activity with the colonoscopy.
This colonoscopy appointment and clinic was much more cavalier and casual than any other ‘surgery’ clinic I had been to, which was nice. Since my last scope in 2017, I barely remembered being there once before for a colonoscopy, but the ladies in the clinic recognized me and my green hair.
For this scope, I didn’t have to take out all of my jewelry, and if I had been wearing a bra – I could have kept it on. I was given a gown and joked that the VA must have known I was coming because the medical socks with grips on the bottom that were provided for me were as green as my hair.
One of the surgery clinic nurses had been transferred to the endo suite, so she got to be my nurse for the third time this year – she was my nurse for my previous thoracic and prior hand surgeries. She only needed one stab to get my IV set up, which was nice, as I usually get poked a few times.
One of the other nurses that were helping to set up before my procedure was shocked at how many people I knew in the clinics, and then the anesthesiologist that I see for most of my surgeries arrived and came by to ask how I was feeling post rib plating surgery. The female nurse was surprised again that I knew another person. I tell you, I know quite a bit of people at the VA and they know me.
As I mentioned before, I cannot lay on my left side with the rib plated area. I had to ask the nurses for a second pillow to lay on since I was told I would need to be on my left side in the colonoscopy suite. I had to do this for MRI’s and for my EUA for my perianal abscess and I always feel like a bother to people, but I do not want pressure on that plate or rib, especially if I am living with a possible second fracture. More about that in my last blog – Thoracic Follow-Up & Slipping Rib Syndrome.
This scope, like my previous four, was not significant and no Crohn’s disease seen in the viewed area. But I knew this would happen and even voiced my complaints to GI when we scheduled it. But, I was right.
After my scope last week, GI wanted a follow-up appointment to discuss our plan.
Because I have symptoms and bleeding, and because my GI care team knows that IBD is small bowel focused, we are planning ahead with either an abdominal CT scan or an MRI – whichever the VA could schedule the soonest. The MRI or CT will allow my GI care team to see any narrowing of the bowel, strictures, or other major problems before another capsule.
After that, we will plan for another pill capsule endoscopy to view my small bowel. Because there are risks for the capsule getting stuck, I will have to be vocal about any problems with my GI team. Hopefully, we can see how my Crohn’s disease is managing with this procedure and we can discuss how to help my IBD.
My GI care team is also looking into medication ideas with Stelara, whether it be having injection doses more often or adding a medication. After Stelara, the options for medication to help my Crohn’s disease are slim to none, and this may be a last resort.
Now, I have scheduled the MRI Enterography and my follow-up with GI, too. After that, depending on what the MRI says, we will go ahead with the pill-capsule next year. My doctor did mention that this was a relatively new type of pill-capsule, one that they order for the VA, that has an expiration date, and apparently, it dissolves within your digestive tract. I will know more about that when the time comes.
Today I gave myself my last self-injection of 2019, my 7th Stelara of this year. This makes 12 self-injections of Stelara I have done, so I went ahead and videotaped myself today, even though I have been sick. – Video Links – Youtube Link – Facebook Link.
In the last week or so, I have only left the house to go to the VA, to either see doctors or visit the pharmacy. I have had symptoms of a fever and a sore throat and I have been coughing with hot and cold sweats. I have been vomiting, had a runny nose with sneezing, wheezing, the works. It has not been fun.
I saw primary care on Friday after dealing with it for a few days on my own. Primary care told me that I have a ‘really bad cold’ and ordered some prescriptions to help my coughing and congestion. I had to go back Monday to get more medicine for cold sores that have plagued my top lip due to being sick and stressing out about it. And then, another visit this past Friday, my 10th day being sick.
I have coughed. And coughed. And coughed so much that I think I injured myself. I thought maybe I had pulled a muscle or cracked a rib, so I tried to rest on Thursday and see how I felt on Friday. I was prescribed some Tylenol with Codeine to help me sleep and not cough at night, but when I wake up, it is just as bad as the day before.
On Friday, I woke up coughing and with severe rib pain again, so I called my doctor to be seen. I wanted to try to avoid the emergency room and that chaos, so I scheduled to see her in an hour – I got lucky and she could see me that quickly. I didn’t even get out of pajamas for that appointment, and she ordered up an x-ray for my thoracic area and meds. There is a lot to cover with the topic of thoracic, so it got its own blog post – Thoracic Follow-Up & Slipping Rib Syndrome .
And then, something I have never experienced happened. Warning – TMI.
Just last evening I had a rectal prolapse and spent two hours in my bathroom with tenesmus and stomach pain. It finally retracted but it was definitely a sickening feeling and scary moment.
I was convinced I had an intestinal blockage. I also thought I was going to have to Army-crawl out of the bathroom at 2 A.M. because my legs had fallen deep-asleep. I cannot wait to have this pill-capsule and see how my Crohn’s is managing. I will have to update my GI doctor about my newest experiences. It is always something.
Sometimes, I feel like I can’t win.
I’ll end this here and wrap this blog up, too, as I have gone over 2100 words on this one already. Please see my previous blog, – Thoracic Follow-Up & Slipping Rib Syndrome – I feel like I have so much going on.
But, for me, I guess It Could Be Worse.
CURE for IBD: 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
IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
Previous Posts on It Could Be Worse:
Thoracic Follow-Up & Slipping Rib Syndrome
De Quervain’s Tenosynovitis – Lefty
Stelara Self-Injections 3 – 10
I’ve Caught This Migraine Too Late
My Ganglion Cyst – The Tetralogy
Perianal Abscess #2 in My Crohn’s Disease Journey
One Step Forward, Two Steps Back
My Crohn’s Disease Journey To Diagnosis
Stelara Self-Injection #2 & Rib Pain
To read your story I should never make a big deal out of my aches and pains. I do feel for you and hope you will find some healing in the future. I hope you have a good VA health plan to help things out.
Hey, none of the biologics worked much for me. My disease is all distal though, with severe perianal disease (at worst it was perianal fistula, thrombosis hemorrhoids, tenesmus, rectal prolapse–the worst) but since I had my total colectomy I’m free to live my life. I bet you have tried *everything* but I will put out there that being 100% gluten-free has been crucial for me, even though I’m not diagnosed as Celiac. Have you tried all the diets? Gluten free? SCD? Paleo? Juicing? I mean really committed to one for 3+ months without cheating at all (that’s the only way to say if it works or not)?
Wishing you a peaceful holiday. XO