Crohn's Awareness Project [The Tumblr Page!]

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[luthienirl]

Crohns And Colitis Awareness Week

It's Crohns And Colitis Awareness Week, so I'm going to bitch about this.

I have had Ulcerative Colitis for one-third of my life. It will never, ever go away. There's no cure. The absolute most I can hope for is brief periods of remission.

I've missed out on a lot of life events that most people take for granted in their 20s and 30s. Like, I've been stuck in the bathroom for my kid's field trips, grandparents' funerals, work networking events, movie premiers, family holidays…

I also got written up at work for absences until I explained that I have this illness which will never go away and requested ADA accommodation to attend doctor appointments and medication infusions (without pay). And a cubicle close to the restrooms.

My employer demanded a doctor's note, probably thinking I wouldn't be able to get one.

Joke's on them; my gastroenterologist was more than happy to sign a letter explaining why these accommodations were necessary.

The treatments available are for Inflammatory Bowel Disease are effective in only small percentages of the population, and most of them aren't particularly safe. Steroids (prednisone) work great but wreck my blood sugar control, fuck with my mood, and make me fat. Most of the treatment options involve some level of immunosuppression, and that's not a great thing in a post-COVID world that wants things to be "normal" again.

I'm currently on a kind of experimental treatment that targets mast cells, and it seems to be keeping things under control.

Only through research can a cure for #IBD - or even just effective AND SAFE medications - be realized.

If you're interested in learning more, or donating to the Crohns & Colitis Foundation to help fund research and patient care programs, please visit https://tiltify.com/@sullivantwins/mrgl.

[crohnsawarenessproject]

‘One Ring’ August 16th, 2022 #onering © Outhouse Cartoons/C.A.P 2022

Last week the day we’ve been waiting for all year finally came to be. My surgery wasn’t supposed to be until September/October but two weeks ago, I was woken by a call from my surgeon telling me that I’d been scheduled right away. At first, I was rather freaked out. We had all these plans to throw my pre-ileostomy body a going away party but the disappointment of fallen plans quickly changed into the hopes for a better life. We immediately hit the ground running. Within a day we were out to see my new Ostomy nurse while getting pre-op bloodwork done. The nurse ran us through a bunch of the basics of life with a bag, giving us a general idea of what was to come. He even sent us home with some sample bags.

I wanted to really get a feel for what I was in for, so I decided to wear one of the bags for 48hrs. Through the day and through the night, I even went and ran errands with it. It was a good primer but not quite the same. It was an empty bag that could only partially simulate what my ileostomy would be like but it was enough to stop some worries. My wife and I also made sure to do a lot of research, choosing not to let others tell us ALL the ins and outs. This made it easier to come up with questions to ask at my first post-op appointment. For the rest of the week my wife would treat me to every craving I could think of! You name it, pizza (artisan), carnitas, steak, ice cream; if I wanted it, she got it for me.

When Tuesday came, I was as prepared as I was ever going to be going through the second major surgery of my life. As these things tend to be, my surgery was bumped by about an hour and a half. Someone in need of an emergency surgery jumped ahead of me but that was okay. I just had to stay out of my head, at that point, alone in the pre-op waiting room. At least they let you keep your phone with you so I was in constant contact with my wife up until the last moment. Once in the OR room the surgeons joked that it was a crowded affair. I was getting a lot of work done with two surgeons working on me simultaneously. I had some laughs with the lovely staff before they put me under and before long I was awake with my new buddy, Shawn. My stoma.

Those who follow me may remember that I call my guts, Gus, after a character in one of my favourite shows called Psych. So I thought it only fitting to name my stoma, Shawn, his partner in crime from the show. Now Shawn & Gus are back together, friends for life.

The first night was decently rough but honestly, I think it wasn’t anything like my first resection. I was off of the button morphine within 24hrs and stopped hydromorphone within 56hrs. I was out of the hospital and back home on day 4. I was up on my feet walking around the house the next day. Another day later I made it out of the house for a quick spell. My energy levels have been growing and it’s been getting much easier to walk & stand up straight. A lot of people were rather surprised with this and, to be honest, I was one of them. But it all came down to the fact that this time around I was the lucky guy who ended up with one of the leading surgeons in the province for non-invasive surgical techniques. They actually pulled all of my colon out through my rectum, having only two laparoscopic points of entry on my stomach. One atop my stoma, the other inside my belly button. It’s really the barbie butt that is causing me to slow down and make sure to not over do it.

My speedier recovery can also be attributed to my amazing wife. Helping to make sure I have what I need but also making sure that I don’t push myself too hard as I tend to do. I’m not a fan of being looked after, so it takes a lot of strength and willpower to not just do everything myself. It’s because of this that I know I will get through this stage without many issues. We are a team and I wouldn’t have it any other way.

Have you had IBD/Ostomy surgery? How did it go for you? What were your experiences? Tell us in the comments below.

[crohnsawarenessproject]

‘Gut of the Tiger’ July 12th, 2022 #gutofthetiger © Outhouse Cartoons/C.A.P 2022

Weight issues have commonly been one of the worst of my IBD enemies. The problems I have with weight mostly started after my first resection but took me years to truly grasp. Over the last two years I’ve been in a constant battle with my body. It is constantly trying to shed any of the weight I attempt to put on it. I’m trying to eat as many calories in a day as I can but honestly, this year has been pretty tough. Food has, once again, become just a fuel source for my body. Rarely does it interest me and yet, through everything, I am still hovering around the 140lb mark. 

My permanent ileostomy is coming up in September, and I’m doing my best to gain and retain as much weight as I possibly can to make my recovery easier. I was in the 120lb range with my first surgery and the recovery process was hard. In all honesty, I would probably have ‘thrown the towel in’ a while back. Not for good, no. I never give up. But I do have my moments where I get so tired of fighting that I would start to give in for a spell. Not very long, but long enough to cause damage. 

Every year I go through the same routine. From the start of Fall and into the colder months, I do my best to put on weight since I know once we get into the warmer summer months, I tend to shed it again as I can’t keep up with my high calorie diet. With the heat, I used to have my breakfast, or at least as much of it as I could get down, then throughout the day, I’d do my best to snack. I tend to snack before going to bed. I have a heavy sweet tooth at night so more often than not, a big bowl of cereal is something I've been able to enjoy once again as lactose-free products have really taken storm over the last few years. And now, with my wife around, I try to at least eat my breakfast and dinner. She takes over the cooking during the nights when I just don’t have it in me which, during the summer, is more often than I’d like.  This has been a positive change for me in the fight against my weight. 

Many of us deal with weight gain & loss due to IBD, how do you cope with it? What are some of the routines you go through to maintain? Tell us in the comments below.

[crohnsawarenessproject]

‘Dracula vs Ironman’ June 28th, 2022 #draculavsironman © Outhouse Cartoons/C.A.P 2022

In my last write-up, I mentioned how iron infusions have been a regular part of my IBD maintenance for nearly twenty years. As of last year, I started on a newly upgraded iron product called monoferric iron. This wasn’t only because I have near-constant anemia but also due to the fact that in 2021, I had begun to bleed rather excessively*.

Less than six months into starting my Entyvio infusions, the new biologic I had started in October 2020, I noticed that I was starting to bleed. Not like my normal bleeding I’d become accustomed to seeing whenever I’d be over-stressed. This was new. Amounts I’d never seen before. But as I’ve tended to do in the past, I let it slide longer than I should have, thinking I’d be okay. In June 2021 I admitted myself into the ER where I received my very first blood transfusion. Over the next five months, I would get several blood transfusions as my medical team couldn’t replace the blood and iron I’d lost fast enough. Late in the fall of 2021, I reached out to my GP to get his opinion on the situation, getting him up to date with, as he put it, my ‘novel of medical information.’

He suggested that if it was possible, to try to get more frequent iron infusions rather than constant blood transfusions as the latter could lead to possible complications. Very very rare complications, but still something to look out for. So with that, I went back to my medical team and relayed the information. At this point, I was admitted back into the ER for more testing and a drug change. We fully boosted my iron back up with several iron sucrose infusions which lasted longer, getting me through to the end of 2021. By the new year I was back on the new upgraded iron monoferric and as of today, have yet to need another blood transfusion. I’m still bleeding a decent amount, but nowhere like I was last year. We’re hoping my upcoming surgery will finally give me the relief I’ve been looking for.

Have you had to have blood transfusions? How did you cope with the stress of it? Tell us in the comments below.

*Refer to Funny from ‘A Bloody Good Time’ [July 12th, 2021]

[crohnsawarenessproject]

‘Iron Man’ June 13th, 2022 #ironman © Outhouse Cartoons/C.A.P 2022

Iron deficiency has been a struggle for me for as far back as I can remember. Back to when I could still have the oral tablets, before they destroyed my guts, leaving me with recurring iron infusions. The frequency would fluctuate along with my health but they’ve always been there, doing their best to keep me on my feet. I’ve gone from getting several infusions in a week to once every six months, but iron has always been a constant part of my health maintenance plan. Up until last year, it was always the same ol’ thing. Your friendly neighbourhood Iron Sucrose. But as my bleeding became extremely taxing on my body; I was introduced to a new form of iron infusion. Enter Iron Monoferric. An ‘upgraded’ form of iron* where, under most circumstances, you would only need a single infusion every six months or so but due to everything I was going through at the time, even this couldn’t last in my body for even a month. At the rate my body was losing blood, even the boosted levels of the Monoferric iron were no match. Just before my wedding, I was able to get another Monoferric iron infusion, this being my fourth in a year's time, and as of right now - it is the longest I’ve managed to keep my levels in a decent range. Hopefully, the Monoferric will be able to last longer in my system after I’ve had my colostomy surgery. Have you ever had iron sucrose infusions or the new Monoferric iron? If you’ve had Monoferric, has it helped you more than sucrose iron? Tell us in the comments below.

[crohnsawarenessproject]

‘Journey to the Geek Wedding of the Century’

May 25th, 2022

#geekwedding © Outhouse Cartoons/C.A.P 2022

In the fall of 2019, I proposed to the love of my life over on the other side of the country, near where I was born in beautiful Nova Scotia. A few months later my health started to take a sharp nosedive. At the time, I didn’t think much of it. I had been super active and stressed out while trying to put together the perfect proposal, so in my head, I just needed some rest to give my body time to recover. This was not the case.

Throughout most of 2020, my Crohn’s had gotten to the point where I could no longer maintain any weight, no matter what I ate. Even while bouncing around the 5000+ calories mark, I was still losing weight by the day. I would eventually get down to a weight I’d not seen since I was in high school, leaving me looking like a husk of who I usually am. I was in and out of the hospital over the next six months, going through weekly magnesium and Iron infusions.  The infusions were the only thing keeping my weight from dropping under 100lbs. 

Near the end of  September 2020, we had our engagement shoot. Even though I was so thin and unhappy with how I looked, I remember having an odd boost of energy which was great since we were able to get our shoot done sooner than we had originally planned. The photos are honestly amazing, but it’s one of those things where you notice your own flaws. A week later I was brought in for a colonoscopy to see where things were at. My GI would tell me shortly afterwards that my results didn’t show any reason for my excessive weight loss. I remember crying over the phone to him, ‘then why is my body withering away before my eyes!’ It was this burst of raw emotion that made him react. ‘Okay,’ he told me, ‘we’ll start the process to switch you from Humira to something else.’

In mid-October, 2020, I went into a small clinic only a short distance from my house where I received my first loading dose of Entyvio. Entyvio has a near six month build up before it becomes effective in most patients and with my weight loss issues still persisting, I needed a lifeline, so I requested to be put on Prednisone.  This wasn’t something I took lightly. I had sworn off Prednisone a decade earlier and hadn’t expected to ever need it again. But now, more than ever, I needed this boost. The next few months went by pretty smoothly. My appetite grew tenfold, a side effect of the Prednisone and before too long I had become a superhuman chipmunk, with my cheeks swelling several sizes. This felt like what I needed to get through the Entyvio build-up phase. But as I tapered off the steroids, my body began to shed the pounds all over again. At first, I wasn’t too worried. I just had to hold out a little longer. Then another complication hit.

2020 had been one of the worst years of my life and I’d already been put through the wringer, so what else could happen? In April 2021 I started to bleed like nothing I had ever seen before. Every washroom visit saw the toilet full of blood. My heart would sink every time I looked at the paper to see globs of blood staring back at me. It would take several months before my fiance and mother in law would break through to me, convincing me I needed to go into the ER. I kept thinking that it would pass; I could get through it; I’ll be okay. But I wasn’t okay, I would need my first blood transfusion while in the ER. There I was, in the middle of the night, getting blood through an IV. Infusions had become my bread & butter; I guess this was just going to join the list.. Blood transfusions and ER visits would become the norm for me over the next six months. Blood was continually pumped into me but never at a rate that could keep up with my excessive blood loss. I was scared. Confused. This was like nothing I’d gone through before. None of my tricks for getting better were helping. With my wedding just eight months away, I was starting to freak out. I was barely keeping it together mentally. The last thing I wanted was to be held up by my best man at my wedding. I wanted to stand strong for the woman I love. It was time to start pushing through some of my built up personal barriers.

In October 2021, I admitted myself into the hospital. Believing the bleeding was caused by Entyvio, I was switched to Stelara which we started on my second day in the hospital. The plan was to top me up with everything I needed as well as to blast my body with rounds of antibiotics. At this point I also started refusing any more blood transfusions following the advice from my GP; instead, I requested that they pump me up with iron so my body could do its best at producing its own red blood cells again. 

I was in the hospital for a week and a half, spending Thanksgiving mostly alone. My fiance came to visit and share a special lunch with me, but it just wasn’t the same as eating together at home. During the first few days, I had gone through several tests including an ultrasound, CT, and my very first MRI. After the bleeding had started in April, I had also developed an abscess which was rather large. Yet the MRI techs claimed nothing was showing up on the scans. I would spend another four or five days getting antibiotics while waiting for another ultrasound only to find out that the techs had decided I didn’t need it. At this point, I was wondering if I was just making a big deal out of nothing and since no one was hearing me out I asked to be discharged. 

I would spend the next several weeks telling myself that this was all in my head, that the experts have said so, but things just kept getting worse. I developed a second abscess; it was hard to do anything but lay down, and even then - I was in too much pain and discomfort to get much sleep. It would take another two ER visits before I was given special permission to come into my GI’s office as they were still not taking in-person appointments. My GI saw everything this time; there was no missing anything now. This was where things started to shift and plans began to form. 

In February 2022, I visited a surgeon for the first time in over twenty years. I had two shots of Stelara by this point, but nothing outside of the antibiotics could stop the abscesses growth. The surgeon told me straight up that my rectum had to go. Its functionality has been too minimal for too long. This honestly shocked me. I had come in looking to get an abscess lanced and now I was being told I needed to have my rectum removed. I wasn’t ready for actual surgery. I took in what the surgeon said but under his own advice, quickly booked an appointment with another surgeon to get a second opinion. She would confirm the need to lose my rectum but also mentioned the possibility of a second resection surgery as the Stelara had yet to be effective.

I had a wedding to get ready for and my entire medical staff had been made aware of the goal. I was going to be ready for this life-changing event. I would give everything to make sure it would happen. A schedule would be worked out for antibiotics and steroids. We made sure to load my body up and then reduce them down to a maintenance level in hopes of keeping things at bay. 

My abscesses had been leaking constantly, causing me a good deal of anxiety and stress over my body; not wanting to be in public for fear of the leaking making a mess in public. I thought Depends was the route I was going to need but instead, I found men's pads for urine and decided to try it for my backside. It worked perfectly to protect my clothing from the leaking of the abscesses but also, it would give me the confidence I needed leading to the wedding.

I spent the next while doing my best to gain weight again. I had dropped back under 140lbs and was starting to freak out as I was back in the ‘danger zone’. Gaining weight has always been hard for me but now I had a deadline to meet. Weeks before our wedding, I topped up on all of my infusions and managed to wrestle my weight back up to 150lbs. A weight I could work with. With only a couple of weeks left to go, my brain switched gears and suddenly, all I wanted to eat was protein. No matter what was on my plate, the protein would get devoured but everything else would just be picked through. To me, this is my brain & body going into survival mode; protecting me from what is coming.

The time had finally come and I was as ready as I was ever going to be. Family and friends descended upon the Fraser Valley, an army of folks ready to help make our dreams come true. Even one of my best buddies, a fellow Crohn’s sufferer, came up to officiate our wedding. A dear friend to the Crohn’s Awareness Project & Gaming4Guts; it felt comforting to have him telling our story to the world. From the moment we reached our venue; all my boys jumped into action, taking great care to make sure I was kept rested & ready to marry my best friend.. And marry her I did. The most magical time in my life with an epic story of how I got there.

Thank you all for taking the time to read about my adventure; C.A.P funnies should come back into rotation within the next month. <3

[crohnsawarenessproject]

‘Swipe Right’ February 15th, 2022 #swiperight © Outhouse Cartoons/C.A.P 2022 “Have you been looking for a new GI specialist or even just a general practitioner? Are you afraid to lose your current medical team? How do you go about finding the right fit for you? Why, by joining our new Doctr app, of course. It’s as easy as swiping left or right!” I can only wish it was that easy to find new medical personnel. Later this year I will be making a big move. Going from one province to another which will involve looking for a new medical team. I only just built what has been my best team to date in the last year or so and I’m going to have to let them go in less then six months. It’s hard to think about which makes me want to ignore the problem as the deadline draws nearer. I can no longer run from the problem. My old GI went MIA at the start of 2021 and for the first half of the year I was considered an extra patient for other doctors in the office before landing with the one I have now. I was supposed to see another temp GI at the end of last year but I pleaded with this new GI to keep me, as she has been outstanding, and keep me she did. But sadly the time has come where I’ll have no choice but to move on from her care. In all honesty, with all of my health issues as of late, it’s hard to think about changing medical teams. Who knows, maybe I’ll find my best medical team yet. One can hope. Have you had to move a great distance causing you to change your medical team? Tell us in the comments below.

[crohnsawarenessproject]

‘New Challenger’ January 18th, 2022 #newchallenger © Outhouse Cartoons/C.A.P 2022 Sometimes living with a chronic condition is just like playing a fighting game. Just when you think you’ve won the game, another challenger steps into the ring. FIGHT! I’m, again, talking about taking on new medical issues while continuing to deal with other main underlying ones. The last two years have been a battle; one thing after another. I had to stop Entyvio late last summer since we’re pretty certain it was the cause of the excessive bleeding I dealt with throughout most of 2021. Now on Stelara, two doses in, we’re in a similar situation to where I was this time last year. I’ve dealt with a fissure and an abscess for the last six months, but am finally killing it. This will allow me to get my Stelara bumped from every 8 weeks to every 4 weeks. It’s incredibly frustrating to go through everything, trying to get back on your feet, only to be knocked down several more steps because something new has popped up. When all the things you’ve learned over the years do nothing for the new issues that have cropped up. Having to start from scratch, learning how to operate around these new conditions. It’s all very tiring. How do you deal with new health issues that crop up? What are some of your common methods? Tell us in the comments below.

[crohnsawarenessproject]

‘Operation 2021’ January 4th, 2022 #operation2021 © Outhouse Cartoons/C.A.P 2022 As we came to the end of 2021 I looked back in confusion and frustration at a year that had me facing more health issues than the years previous. On its own, 2020 had been a record year for bad health as well, which had then seemingly passed the baton to 2021 to keep the downward spiral going. I sit here still, in the early days of 2022, fighting this fight. One would say fighting even more on top of the usual battles. There are many unanswered questions but with several blood transfusions, a major medication change and nearly four months of antibiotics, I could finally see a little more light at the end of the tunnel. I had told myself in the early days of my relationship with my now fiance, soon to be wife, that I wouldn't let her see this side of my disease. That I would always stay in control and things would be fine. Rarely is that the case. Your body can build tolerance and resistance to medications over time making them all but useless. My luv and I have gone through a lot together in the last couple of years and she's been my rock through all of the battles I've faced. I now promise myself that I will never give up on health. That I'll do everything I can to keep myself out of the hospital but even when I do have to go back: we'll get through it together. So, for 2022, I say once again that this is the year I take back control. Have you been dealing relentlessly with a multitude of health issues or have had new problems surfacing that you've not had to deal with in the past? Tell us in the comments below.

[crohnsawarenessproject]

‘Who Ya Gonna Call?!’ November 16th, 2021 #whoyagonnacall © Outhouse Cartoons/C.A.P 2021 Who ARE you gonna call?! Well, usually nobody. Those noises you hear coming from your favourite friend are a common side effect of the digestive process called borborygmi (bar-bo-RIG-mai). Borborygmi is caused by air traveling through your digestive tract through a process called peristalsis which in turn involves muscles contracting within your digestive system to keep food moving along. Alongside this process you have your gastric juices checking in for work, creating a goopy substance called chyme. This chyme is full of gas and air and when moving in a typically empty stomach or empty small intestines, which can actually act as an echo chamber, intensifies the noises for your friends and family to hear. We all know these noises all too well. I even named my guts, ‘Gus’ after a character in the show Psych, because of it. Gus, in the show, is always eating and when he isn’t, he’s thinking about eating. I thought this name is rather appropriate considering my never ending quest to either gain or keep weight on. I’m currently about to start the FODMAP diet for a couple of weeks to try and identify any food triggers I may have missed over the years. Gus could become rather talkative throughout this process. Are your guts a chatty Kathy? What’s an amusing anecdote involving your guts? Have you given them a name? Tell us this and more in the comments below.

[crohnsawarenessproject]

‘A Bloody Good Time’ July 12th, 2021 #abloodygoodtime © Outhouse Cartoons/C.A.P 2021

I’ve done it, I’ve been on one of the scariest medical adventures of my life to date. I’ve now sat in an ER watching bags of blood being transfused into my body after hitting a scary low red blood cell level due to chronic bleeding issues that snowballed over the last couple of months. Things were a mixed bag at first. Doctors worried the Entyvio wasn't working and instead could be causing my severe bleeding.

Let’s take a step back.

A few months ago, my Entyvio was adjusted from every eight weeks to every four weeks, which was around the same time my temporary GI had switched my standing blood work order from every month to every two months. Shortly after these changes, I started to see blood in my stool.

At first I didn’t think too much of it. A lot of us living with IBD have experienced blood in our stools. It’s not unheard of. A weekend went by, though, where it was just non stop. Everytime I went to the washroom, I would lose a fair amount of blood. Sometimes It would just be blood.

My initial reaction was that it was something I’d eaten. I thought about it, realizing my intake of beef had gone up that week and usually that would cause some issues for me. That had to be it. So I cut back on my beef.

Another week of constant bleeding went by without letting up. I was starting to feel it now. I was getting a bit scared. I reached out to friends and family and someone mentioned that, ‘women lose blood every month so [I] should be fine,’ so I let it slide again.

A few more weeks passed, no changes, I was really starting to feel it now and my blood work was finally in. I could show them what was going on. I had proof. The results show my hemoglobin sitting at 80 points and the rest of my profile being completely out of whack. This should light a fire, and I’d be the one to start it. '

I called the GI office asking for iron (this is all I knew to ask for at the time), stating what I was going through and how I felt. At this point I could barely stand and or walk. My heart felt like it wanted to race out of my chest. I was getting really scared now. I’ve never felt this bad throughout everything I’ve gone through. This was getting to be too much.

This is when they set up an emergency scope. Another week passed before scope day arrived. It was determined that my guts were pretty clean. They mentioned hemorrhoids but an ER doctor clarified that they were only level one which causes minimal issues. This proved a point that I had been trying to make previously, that my health was better than ever, where my Crohn's was considered. This was new. Is new. '

However at that exact moment I wasn’t feeling that great. I was also supposed to receive iron and/or a blood transfusion that day but it never ended up happening. This was a Friday and we all know what would happen over the next couple of days. Absolutely nothing. I knew the numbers everyone was working with were old. Too old. They didn’t have all the current facts nor did they understand how bad I felt.

I tried calling and leaving a message for the doctor just the same. Maybe I could make it to Monday and they could just get me into the IV lab real fast. Well, I barely made it to Monday but thankfully they got back to me first thing in the morning informing me that to get in for IV therapy would take over a week and that I should go to the ER if I believed I needed it sooner. That was an understatement, so we immediately started packing, getting me ready for the ER.

Once we arrived we managed to get through triage pretty quick. I told them what was going on and the moment I noticed a brow begin to furrow I reached into my bag, producing the blood work results from two weeks prior. The moment they saw the numbers things got moving.

Going back through my medical records, I’ve noticed that I’ve never really been in the normal hemoglobin levels but I rarely was under 100 points. When they did my blood work in the ER I was sitting at a cool 40, a number they claimed they hadn’t seen in some time.

Hey, at least I’m shaking things up. Going on new adventures. Like how when they moved me to the trauma ward to give me my IV. Something that normally goes pretty smoothly for me. I have big juicy veins, although they do roll, but as long as I bring this up, it’s usually accounted for. Not this time. No.

First of all, this was the most painful of any IV I’ve ever had, and it started when they accidentally blew a vein in my forearm, causing blood to squirt all over my leg and the floor, they then moved to my hand to put two more in. The pain was almost more than I could take, I wasn’t ready for this when I came in but at least the job was done and they were placed. I thanked my nurse as I always do and I was moved to another section.

I was still pretty chill at this point even though things weren’t the best. I knew why I was there and what I wanted, but there was one thing I wasn’t ready for. A new nurse came in to tell me what was on the docket. I was lined up for a blood transfusion. Three bags worth, but I was going to be admitted and the procedure states that you need to be COVID swabbed. My heart dropped, my smile disappeared and my heart which had slowed a touch since arriving began to pump faster. I had never had a COVID swab. I’ve kept home away from everyone and everything and always wear my mask while I’m out.

Now my thoughts were racing due to the things I had heard or read about in the past regarding people's experiences swabbing. I was so thankful for the fact that I had a very kind and patient nurse who talked me through the entire thing and after everything I had gone through getting the IVs in my arm, it was a piece of cake. It didn’t feel great, that’s for sure. But it was nowhere near as bad as I thought and not even on the same level as what I had gone through with the IVs. Teaching me that my years of experiences have helped me to build a thicker skin. Something younger me wouldn’t have been able to comprehend.

The rest of the night was fairly uneventful. They gave me my first bag of blood, during which the ER doc came to talk to me. They basically wanted a GI doctor to go over everything with me, but they were good after I told them that my Crohn’s was doing pretty good and that I had all of that under control with my GI/GP and that it was my GI’s office that had instructed me to come in for the transfusion.

Shortly after my first bag of blood, I was moved into my own private room in another section of the ER where I received another two bags of blood. I’d end up spending another 8 hours through the night watching my tablet, unable to get any kind of sleep due to the warm temperature of the room. Once the morning shift nurse arrived, I was up, showing how much better I was feeling, ready to go home but it’d be another hour before they’d make it to my room.

Luckily the ER doctor fully agreed with my self-diagnosis, releasing me to be picked up and taken home. We made sure to hit up my favourite diner on the way home, filling me up with a good breakfast after a long night.

The moment I got home I called up my GI office requesting to get the new monocyte iron infusion I was promised the week before as well as to have them revert my standing order back to every month as I was not comfortable with it staying at every two. I was put on Entocort to try and heal some ulcers and it seems that for now it has mostly stopped the bleeding. I’m not entirely convinced that we’ve solved the problem, but for now we’ve put a very good bandaid on it.

Have you ever had serious issues with your hemoglobin before? How’d you and your medical team navigate it? Tell us in the comments below.

[crohnsawarenessproject]

‘Next Level’ May 11th, 2021 #nextlevel © Outhouse Cartoons/C.A.P 2021

A lot of times, when creating our C.A.P funnies, I tend to draw on ideas from my own life, and then when it comes to the accompanying write up, I like to work in a relevant health event. This week is no different.

As some may know, I side hustle in photography along with graphic design and over the past week I had been putting together cards for mothers day and fathers day when I inadvertently stumbled upon some distressing photos from last year. The first was a typical photo of my ribs trying to escape my body along with my chest being decently sunken in. This is something I’ve seen many times over my life with IBD but then the next photo did me in. In front of me was a photo of my arm, rail thin. I couldn’t handle it, in a single motion, I tossed my headphones from my head making my way over to my fiance to curl up into a ball beside her. I’ve heard in passing about how a mothers brain can trick them into forgetting the pain of delivery and I’ve honestly started to wonder if our brains do the same with our IBD. I know that last year was bad. I know it was one of my absolute worst years, but sitting here at my desk, feeling the best I have in a while, it’s hard to actually visualize what happened and just how bad everything was. To me, it was merely another drop in the pond. This photo proved that that wasn’t the case. Everything came back up in an instant. But this too is okay. You see, I was only at the start of my run. Weak but not ready to give up, I continue to progress to the next stage in the game. One level. One upgrade at a time. Testing and procedures are our boss levels while our meds act as our skill upgrades. We venture out into the world seeking to find our final upgrade. Remission. Just like in a video game; it helps to take a break and come back fresh the next day or week. We all need rest to regain our strength and come back at it with a clear mind and body. Sometimes I forget JUST how bad it REALLY gets. Pretty sure it's just my brain trying to prevent me from remembering. Have you come across distressing photos of yourself from the past where you were in worse condition than you are currently? Was it something your brain tried to prevent you from remembering? How do you deal with those feelings? Tell us in the comments below.

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‘Supercharged’ April 26th, 2021 #supercharged © Outhouse Cartoons/C.A.P 2021

This was it. I had registered for my vaccine a few weeks earlier but because I had to make sure it would line up properly with my Entyvio, it had taken time to book the appointment; but booked it I had. As the days counted away, I became increasingly nervous. Even though I get IVs and bloodwork on the regular, I’ve always had a fear of needles that resides deep within me. I haven’t had an intramuscular injection since my early twenties and that last time had left me with a bit of a bad memory. I was still in my early years with Crohn’s at the time, ending up in the hospital every other month or so, and at this point the pain was so bad that an ER nurse had to give me a demerol shot. Due to how crazy it can be in the ER, they were rather quick giving the injection and I remember the pain being unbearable. A little later I was admitted and sent upstairs into a private room where once again, I was in need of another shot. This time I had a resident nurse and she was great with me. She sensed my unease and began to just talk to me. Once she had noticed that I was calm enough, she gave me the jab without me noticing a thing. I tell you this because as the morning of my vaccine arrived, my nerves shot up 100% and as it got closer to my appointment, it only became worse. As we walked into the hall my heart was racing, I was stumbling over my words… just full of unease. But I knew that this was just another step in my medical journey that I would need to stand tall, or rather, sit up straight for, and work my way to the otherside of. Once checked in, I went over to my directed chair to have introductions with the volunteer who was to inject me. Right away I was feeling a bit better with how nice they were. We went over my details once again before we got down to the task at hand. I let my arm hang down as instructed and looked away as I always do when a needle is about to go into me. The volunteer proceeded to ask me about the weather and of course I began to talk. It happened so fast that I actually only felt the swab being placed against my arm and then, just like that, we were done and my old fear of needles had been reduced to a minor anxiety. Hopefully permanently. As I write this the morning after, I have no side effects aside from my arm being a bit sore. I feel like I’m ready for my second shot now! I couldn’t have done it though without my beautiful fiance. She gives me the strength and courage to not give into my fears and to stand strong for her and myself.

Do you have a fear of needles, or of any other medical procedures? Did you have to psych yourself up to get through it or did you have a loved one help lend you the strength to persevere? Tell us in the comments below.

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‘My Hero’ April 12th, 2021 #myhero © Outhouse Cartoons/C.A.P 2021

This isn’t your normal Funny from us but rather an appreciation post to my beautifully strong fiancé who had everything come crashing down last year; a cascade of events that would destroy anyone and yet, she somehow managed to pull it all together and in my eyes, she’s a hero.

Last year started out bad for us even before Covid was a thing. My worst fear, since we got together, was that she would one day see the nasty side of my crohn’s. I had done my best to keep in control so it wouldn’t come between us but as we know, we sometimes have no control over these things. My health started to slip in February, my fiance's grandmother passed away, and then shortly after that the Covid lockdowns began. The initial fear of Covid helped to destroy any health I had left, seeing my weight plummet to numbers I hadn’t seen since my worst years in high school. With that and being forced to stay home due to the virus, my fiancé stepped up to manage the household. She went to work first thing in the morning (4am) so that she could be home as soon as she could, usually making trips to the store on the way home in the hopes to provide me with something I’d possibly be able to eat. She would cook and clean. Work and shop. All of this while I withered away in front of her. The stress of dealing with idiots, not caring about covid at her work and in public, while worrying about my health and her family's health and also stressing about if we would be able to get married or not, was far too much. It ate at me everyday but I was helpless. Now in 2021 my health has started to rebound because of new medications, our wedding is postponed and things are calming down for the most part, letting us come back down from the high that was 2020. Household tasks have been shared between us once again. But the one thing I will always remember is how much of a superhero my soon-to-be wife is and how loved I feel. I know she is there for me and will be for the rest of my life. I can never thank her enough for everything she’s done for me but I can show her how much I love her and that I will never give up on her or my health. I love you, My Hero

[crohnsawarenessproject]

‘Reset’ March 22nd, 2021 #reset © Outhouse Cartoons/C.A.P 2021

Groundhog Day style movies have come back in a strong way over the last decade with several interpretations of the genre. I’ve always associated my flare days, weeks or even months to be like a groundhog day movie. I would wake up to spend the entire day attempting to get on my feet. Getting whatever food I could stomach into my body. A constant stream of unfinished meals, constantly trying to get enough into me so that I could get out of bed or off the couch. Night would roll around and I’d finally be feeling well enough to sit at my desk to do something, but I would refuse to give up on my day and would instead stay up throughout the night, finally going to bed sometime after midnight to only start the process all over again the next morning.

Have you found that, on the days or weeks when you’re flaring, you’re constantly fighting to have just a bit of time when you can feel somewhat normal and once you have that time you don’t want to let it go? Tell us in the comments below.

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‘The Price is Right’ March 10th, 2021 #priceisright © Outhouse Cartoons/C.A.P 2021

When I was first diagnosed almost two decades ago, it was never mentioned that besides the main symptoms of Crohn’s I’d likely begin to see other complications throughout the years. I remember almost laughing it off when I started getting questions like, ‘do your joints hurt?’ during yearly medical evaluations with the drug companies, but it wasn’t that long after that I started getting the joint pain they had been asking about. And that was only the start of things. As the years went on, I would see small signs of this or that emerging but it wasn’t until this last year that I really started to notice what my medications had been hiding from me all this time. It started when I noticed these bumps all over my legs. They’d get fairly big, hard and painful. I was told they’d go away after a week or so but they didn’t go away until I was put on prednisone and as I weaned off of that, some of them slowly came back. This time, however, nowhere nearly as large.

Throughout the years I've dealt with vision complications, memory issues (brain fog), joint pain, skin issues and a few others that I simply can’t remember currently. All these symptoms would usually subside while my medications were working. Have you experienced other health issues as your journey with IBD has gone on? Tell us in the comments below.

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‘An Inconvenient Truth’ February 15th, 2021 #aninconvenienttruth © Outhouse Cartoons/C.A.P 2021 Zoom/VOIP calls have been a major part of 2020 and continue to be so well into 2021. They provide people the connection they need during a tough time of lockdowns and restrictions. However, not being able to see our doctors in person has been one of the many inconvenient restrictions we’ve had to deal with over the last year.  Even turning the difficult task of diagnosis into a monumental headache. For myself during this time, and still to this day, I have been reduced down to phone calls, finding it difficult to express my concerns over what is happening with my health. At one point after several months of deteriorating health, I remember crying over the phone to my doctor; pleading for a break as my body fell apart with each passing day. But without having the physical connection of seeing a patient in person, I believe it was hard for my doctor to truly grasp the severity of the situation. I spent months going back and forth with both my GI & GP trying to discover why I was losing weight at such an alarming rate. Test after test with none of the results pointing to an answer. Phone calls to try and reach the doctor but only ever getting to talk to a receptionist. More phone calls. Feelings of helplessness settling in deeper and deeper. It wasn’t until I was brought in for my second colonoscopy in less than a year that he saw me face to face and immediately agreed to switch up my medication, thus starting a new chapter in my story. Has your GI office switched to phone or even video appointments? How has this affected your health through 2020 & 2021? Tell us in the comments below.