I’d like to start off first by thanking everyone who visited, messaged, DM’d, emailed, texted, called, commented or sent me cards from other countries. The amount of support the last few weeks has been overwhelming. From friends and family to complete strangers, messages have been pouring in wishing me well during my surgery. A huge thanks to the IBD community for coming together and supporting me, it truly means a lot.
I know a lot of you have been following along with my journey and have been waiting for this update, sorry it’s a long one. My apologies for not getting it out sooner. I needed to follow-up with my surgeon to make sure I have my facts straight and know exactly what I am expecting as far as short and long-term recovery.
On October 13th, 2017 I went under the knife to remove a section of bowel that has been inflamed and healed so many times that it became strictured. A stricture is a build up of scar tissue making many undigested foods unable to pass through leading to frequent bowel obstructions.
**WARNING – GRAPHIC IMAGES OF MY SMALL BOWEL BELOW**
The surgeon did a laparoscopic procedure called a right sided hemicolectomy. He removed the scarred section of my terminal ileum all the way down to the top of my large bowel. I went into further specifics in my last post linked below.
This recovery was significantly more painful than I was expecting, much worse than my last abdominal surgery where they did a laparoscopy. Although I could walk, moving was difficult and very painful to say the least. Unable to sleep in any other position than sitting up, any movements that use your core muscles was excruciatingly painful and I could not physically cough or clear my throat which was very uncomfortable. The pain medication was not working as effectively as it should have. This made things very uncomfortable for the first few days and they could not give me more medication as I stopped breathing while in the recovery ward while under the influence of some heavy narcotics. A little scary but thankfully I was under close watch by several fantastic nurses.
They do not send you home until your bowels wake up and start working again. This took 4 days, longer than I expected but I also wasn’t eating any solid food. Without an appetite, it is extremely hard to force down food especially when you’re nauseous. I tried to sleep as much as I could to pass the time in between going for walks up and down the hall to get the bowels moving. I spent my 26th birthday in the hospital and it felt like a bad dream. I hardly remember having a birthday to be honest, I was in a lot of pain and slept through most of it, but thankfully I had some family and friends stop by.
After 4 days, my bowels violently started working again. This was the moment everyone had been waiting for and that meant if everything went well overnight, my surgeon would release me the next morning. That night I had extreme pain as I was walking to the bathroom, possibly from introducing solid food. I barely made it just as everything started to go dark. I sat down on the toilet and passed out briefly from the pain. Thankfully the pain subsided and a nurse helped me back into bed.
Just another comical day in my life with Crohn’s…
Ironically, I am currently on the job hunt despite my health. Regardless of my condition, I was applying anyway in hope of setting something up following my surgery. I finally got the break I was looking for when I got an interview at a local office of a large engineering firm for a job in the Geoscience field (what I majored in). They contacted me the day before my surgery (Thursday) asking to set up a phone interview and I did tell them I was going in for a surgery and tried to push it for another week but they told me the best they could do was Tuesday, 5 days post surgery. I did not think I was going to be in the hospital longer than 3 or 4 days so I thought it wouldn’t be a problem since it was over the phone. Man, was I was naive thinking I would be out before Tuesday.
I did not postpone the interview and if any of you know me by now, you know I’m a focused, determined and rather intense person. I refuse to let my disease hold me back. I explained my situation to the nurses and they did their best to accommodate me but the only quiet, private room was the surgical ward private shower. So, I posted up in the shower while on hydromorphone and tramadol. If any of you have been on hydromorphone (Dilaudid) you know that stuff is no joke.
I did the interview a little dazed and loopy to say the least, but hilariously got it done without even mentioning my situation to the interviewer. It was certainly not my best interview, that’s for sure.
Released and in rough shape, down over 20 lbs in 5 days
I was released after being in the hospital for 5 days and was finally able to go home. I was going to the bathroom non-stop since my bowels fired up and anything I ate went right through me, often even before I had finished eating, it was rough. After 5 days in hospital, I lost over 20 lbs. I purposely bulked up before surgery to 212 lbs and only 5 days after, I was down to 191 lbs. As I write this 4 weeks post-op, I’m sitting around 193 lbs and everything I eat is still going straight through me.
A big tip to anyone with IBD or experiencing bowel issues, Imodium is your lifeline and I cannot recommend it enough to anyone with frequent washroom visits. Despite taking 3-5 tablets of Imodium a day, I was still having to go to the bathroom 7-10x daily. Things have got a little more manageable but it’s a balancing act between taking too many and not enough.
3 days after getting home, I was still in a significant amount of pain and ironically, I got a call for a second interview this time in person. Still on some heavy painkillers, I hadn’t left the house or gone far from a bathroom since the surgery and they gave me only a few hours notice. Refusing to make excuses and pass-up on a dream job, I pulled out my suit, suited up and headed for the interview.
The interview was a 45 minute drive away and I couldn’t even make it an hour without going to the bathroom so without any spare time, I had to stop at a local Starbucks bathroom. Being stressed out and pressed for time, I forgot to bring Imodium and had to find the nearest pharmacy to pick up some emergency Imodium 15 minutes before the interview. I popped 2 more quick dissolve tablets praying I would make it through the interview.
I made it to the interview with only a minute to spare and just barely completed the hour-long interview. I came clean with the interviewers explaining my situation without mentioning what the surgery was for and I think it was the right decision as they said it showed a lot about my character for showing up despite my circumstances.
Like many other professionals with IBD, I unfortunately do not disclose that I have Crohn’s. It’s unfortunate, but the harsh reality in such a competitive job market is anything that can make you look like a “liability” to a potential employer should be avoided. Anything an employer can use to eliminate a candidate even on the suspicion of having long-term health issues they will use it. I was even told by an exec at the Canadian Crohn’s and Colitis Foundation to leave my extensive volunteer experience with the foundation off my resumé even by chance that an employer may think I have IBD.
I know it sounds stupid, I run a Crohn’s blog and if you google me, it is certainly not hard to find out my history but I prefer to keep my professional career separate from my website and social media. I apologize to anyone who has connected with me on LinkedIn, I keep that strictly related to my career.
I barely made it through the interview without having to use the bathroom, almost passed out while being in a ton of pain and all while being nauseous from the pain killers but somehow, I crushed the interview.
I don’t know if it was the mental stimulation or motivation to get off the couch and stop feeling sorry for myself, the interview was just what I needed to kickstart the recovery. Refusing to give up is what defines me, its what I’ve based my success on while having the mental strength to overcome whatever is thrown at me. Just another day in my life with Crohn’s.
Everyday following the interview, I started healing unbelievably fast. Faster than even I thought. Everyday there was noticeably less pain, mobility increased, able to walk longer and I could finally sleep on my side. By 10 days post surgery, I was already back in the gym riding the bike and doing some very light work on machines. I could not do anything that involved core so I had to be very careful on what machines I was using or I could risk developing a hernia. I was still in pain but I’m not the kind of person who can just sit around when there’s something more productive I could be doing.
Long Term recovery and Fibrostenotic Disease
The recovery has been going great. I am about 75% right now and will hopefully make a full recovery by 6-8 weeks post surgery. As I say, “I haven’t taken my new intestines for a test drive yet” but I am hoping to start reintroducing some new foods that I haven’t been able to eat in years once my bowels settle.
I haven’t eaten beef in over 6 years and I haven’t been able to eat a salad with greens in about 5 years either so I think I’m long overdue for a medium-rare steak with a side salad followed by a big, juicy beef burger on the way home. Yes, I’ve been dreaming of this for years!
My surgeon said my bowels should settle down, back to normal within the next month. The good news is there is no active disease and I should return to normal with significantly less symptoms unless I get an active flare-up again. The bad news is there are still a few scarred areas further up into the small bowel called Fibrostenotic Crohn’s disease. Fibrostenotic Disease are inactive scarred areas of intestine that are a result of the long-term inflammatory nature of the disease. This is very difficult to treat as surgical approaches are the only way to deal with these issues.
He said the areas of Fibrostenotic disease could not be removed or stricturoplasties installed in these areas this surgery or there would be too much trauma to my body. If these areas become inflamed again, scarring is likely and these areas may have to also be surgically altered or removed. My surgeon said these areas still have a large aperture for food to pass and should not cause any obstructions at the moment and I should be able to eat most foods again!
The long-term plan is to stay on Humira but reduce the dosage to bi-weekly injections rather than weekly as a maintenance dose. Sadly, I was really hoping to go medication free but both my surgeon and GI strongly advised against it since I have such a severe and progressive form of Crohn’s Disease. I can cause significantly more damage to my small bowel if the inflammation is not under control eventually leading to further scarring and the need for additional surgeries in the future.
Do I want to be on a heavy immunosuppressant medication? Absolutely not, but I trust and value my surgeon and GI’s opinion. They genuinely care about me and are very openminded to taking a holistic, medication-free approach but they said it’s more about your quality of life.
In my opinion, is life really worth living if you are too sick to enjoy it? Sure, my life expectancy might be shorter than most (there is no current research supporting a shorter life-span while taking Humira) but I can live my life relatively normally without chronic pain and suffering. If I get cancer or other issues, I will just do what I’ve always done and stay positive, mentally strong and roll with the punches as they come to me.
More updates to come once I’ve taken my instestines for a “test drive”.