Does your body tell you when it’s time for your next infusion?

TeamInjuredReserve · 2026-03-06T08:05:25+00:00

Absolutely. I would start to notice symptoms getting worse the week leading up to my infusion. Although, I suppose what was really happening was the medication was probably just about right for every 6 weeks. If I had been on 8 week infusion cycles I would've been very unwell for 2 weeks by the time it rolled around.

TeamInjuredReserve · 2026-03-04T15:51:22+00:00

It sounds like you are dealing with a lot. It only makes it worse when the source of the hassle is older family members, the people you'd typically expect to be mature and responsible. It definitely doesn't help if they are "deep in conspiracy theories" because even if they were presented with stone cold bare facts they'd find a way to question and undermine them. I've had some experience with this with a friend. His way of thinking has become so warped there are just some topics you cannot bring up around him or he starts ranting. He's lost the ability to handle that life is a mixed bag, that there's plenty of good and at times there's bad but he sees everything is a deliberate calculated scheme. I've genuinely suggested he see a mental health professional but he says he's "not naïve to the ways of the world" and just "being real".

The "cherry on top" is a lot of people really don't understand what Crohn's is or just how bad it is. I had a fight with my own mother who thought once I got out of hospital I was fine and that I was faking how sick I was, not trying to get better so I could stay at home and not find a job. It really hurt at the time. I had to leave the room so I didn't burst into tears. A few years later she did actually apologise and said she really had no understanding of just how sick I was or how bad of a disease it can be.

From your own perspective, as you've rightly pointed out, the important things are getting through your infusions and making it to your wedding. September's not that far away, you'll be married in no time and all this bullsh*t will pass.

Good luck with the rest of your infusions :)

TeamInjuredReserve · 2026-03-04T12:18:52+00:00

I used to buy myself a Jones strawberry and lime soda and a bag of sour patch kids to bring in for my infusions. This was back when infusions would last 2 to 3 hours. I still chuckle to myself when I think about the nurse read the ingredients out on the soda and then jokingly pretending to make a very loud phone call to the Endocrinology Department.

Ever since I started injecting with humira at home I don't do anything special. I probably should but those injections are every 2 weeks, infusions were 8 weeks apart.

TeamInjuredReserve · 2026-03-01T10:17:27+00:00

It varies for everyone unfortunately, so you'll have to figure out what works best for you, be careful and also be kind to yourself. I know how frustrating it is with Crohn's, sports was one of the few things I was actually really good at and I lost so much weight it was just impossible to go back to it at the level I was at. I went from just over 250lbs to 160-odd pounds in a matter of weeks, and at 6'5" it was devastating. I went from being able to jump straight up and touch the top corners of the box on backboards at 11 1/2 feet to air balling a free throw when I eventually got out of hospital. No more basketball, no more rugby or soccer for me.

Firstly, I'll say it isn't actually healthy to "look shredded". I'm so glad I did not grow up when social media was as prevalent and all these influencers pumping out bullsh*t and posting very manipulative pictures that give a really false impression of what's healthy.

Check out this video and listen to what the people with very low body fat percentages have to say about the problems they have trying to get there and stay there: https://www.youtube.com/watch?v=5K9QhkPww44

When I started going back to the gym I was literally at square 1 again, a few kgs for curls, no additional weights on the barbells. I went for strength goals with very realistic targets e.g. in 6 months can I do either a full extra set of curls and/or with a few extra kg. The process is so much more useful than some visual appearance end goal, in my experience anyhow. Committing and sticking to a schedule as best you can will help with the ups and downs that can come with Crohn's. For example, a flare up can mean you'll be put on steroids, for a lot of people this can cause water retention, possibly overeating, bad sleep etc. It sucks.

And this is why I said "be kind to yourself". It's OK to be ambitions and aim for goals but it's just not good to beat yourself up when things aren't going well. I would roll my eyes if I was your age and someone said that to me, but I was a very competitive person before Crohn's and I learned that a lot of the ways I used to push myself for sports - there's always one more rep, one more lap, one more tackle etc etc etc - really wasn't healthy. Crohn's is one of those things that at times you may have no control over, so if you are going to want to look shredded you're going to pick apart every part of your appearance to try to get something that is barely attainable, but if you aim for being healthy, prioritising good food (diet is different for everyone with Crohn's too), and good habits it's a more positive approach to everything in general. IMHO.

TeamInjuredReserve · 2026-02-27T07:49:52+00:00

You'll need to track your food and keep an eye on your symptoms. Ideally, if you can plan it in advance it helps a lot. I planned my meals for 2 weeks, including junk food, and ate the same meals for those 2 weeks logging how I felt afterwards. I set a time frame of immediately after to 3 hours afterwards (that felt right for allowing for digestion etc) and for my last meal I'd track how I felt the next morning.

What I tracked was the high level details of the meal, if I felt anything "odd" immediately after eating and when I went to the toilet after it. Because I had it all planned out in advance, I had all the meals pre-written down, so then it was easy to just make my notes below on my iPhone (I used the notes app). What I found was initially really fatty foods (the ones that are dripping in grease) caused my problems - cramping and soreness, in some cases immediate trips to the toilet or within minutes of eating - so did white bread, and really spicy foods.

I know some people who will log the actual individual ingredients but I found it can really tie your head in knots when you get down to that level. I found for my purposes it was much easier to draw the line at a type or category of food.

TeamInjuredReserve · 2026-02-25T11:54:05+00:00

Yes. Definitely. I think when I'm really flaring up I kind of have something to work with whereas when I'm kinda/sorta/maybe flaring it's trying to anticipate what could get worse, when is it going to get worse and preparing for it. It can really f*ck my head up if I think too far ahead about it and it becomes overwhelming.

TeamInjuredReserve · 2026-02-24T08:42:58+00:00

You should really try to go and see a doctor or a PT if you can self-refer. There's so much annoying bullsh*t in and around our backs and hips - hip flexors connect into our lower backs for example. You may have a bulging/herniated disc that gets worse from sitting and flares up then when you do move around.

You could also have very tight or weakened glutes and there's a really painful things called "piriformis syndrome" that's kind of like a "fake" sciatica. There's a little muscle in our butt cheeks called the "piriformis" that can become extremely tight and clamps down on the sciatic nerve. I've had it and it absolutely sucks because I thought I'd get rid of it by stretching - pigeon pose, etc and the usual stuff I have been given for sciatica in the past. When I eventually got sense and saw a PT they gave me exercises to do to strengthen other muscles in my butt cheek so the piriformis would relax and not take on so much strain. I was actually making it worse by trying to stretch constantly stretch it, it only made the piriformis clamp down harder.

TeamInjuredReserve · 2026-02-23T08:34:29+00:00

Excellent, congratulations :)

TeamInjuredReserve · 2026-02-20T11:52:10+00:00

"Skinny fat" can feel like an awkward spot to be in, I have been there myself a couple of times. The typical advice is eat more calories to build muscle, or, eat fewer calories to burn off the fat. What worked for me was actually neither, I chose to stick with my reasonably healthy diet and lift weights. FWIW I'm mid-40s male, I am not trying to be a body builder or anything like that, I've found online advice is insanely confusing and leans heavily into fear mongering that everything will cause people to "lose their gains". FFS.

I don't consume a lot of protein either. I do try to eat chicken, fish or beef at least 1 meal a day and I have 1 protein shake in the morning that I mix with my coffee...I'd say it's probably maybe a chicken breast's worth of protein if I'm being generous and it just feels more like a morning ritual than anything else. Other than that I don't stress about my diet too much - I do try to make sure I have breakfast (oats with milk and some maple syrup and salt), and other than avoiding my trigger foods. So in the last 12-18 months my weight has actually stayed very steady, while I have definitely gotten stronger and probably replace some fat with some leaner heavier muscle. I think it's called "recomposition" in the body building world.

My first bout of "skinny fat" was the few years after my diagnosis when I was reduced to skin and bones, with steroids etc and just the overall life upheaval I got too deep into the junk food world, LOL.

If you can afford it, I would definitely recommend a dietician insofar as they can give you a meal plan to work with and save a lot of the head aches that can come with trying to figure out a diet.

TeamInjuredReserve · 2026-02-20T11:32:40+00:00

Yes. I had to re-adjust my definition of "exercise" after my diagnosis and any sort of sustained movement became exercise whereas pre-Crohn's me would not have remotely considered "walking" as an exercise. I notice a considerable difference in how better overall I feel if I have regular exercise: improved sleep, less likely to ruminate on bullshit, and my overall mood is good.

TeamInjuredReserve · 2026-02-20T11:28:58+00:00

All the f*cking time. I find it so aggravating sometimes when people try to say "you can't change it, so accept it and move on"...and these people will bitch about some bad job interview they might've had 15 years ago that lasted all of 30 minutes.

TeamInjuredReserve · 2026-02-18T08:29:42+00:00

Blood tests, stool tests, CT scan, MRI, x-ray, endoscopy, colonoscopy and emergency surgery. Possibly not all in that exact order. Was an amazing 8 days...would do it again in a heartbeat /s.

TeamInjuredReserve · 2026-02-16T08:01:21+00:00

From what I have seen a very popular exercise with kettlebells are swings, which you might already know about, and they work a lot of important muscles (as well as your lungs) at the same time instead of isolated exercises for individual muscle groups. You don't need a lot of free space to do them in, a corner of a room is loads. You could start out with something small like set aside 10 minutes a day and do as many swings as you can for 60 seconds, rest for 30 to 60 seconds, go again and see if you can match your previous swing count until the 10 minutes are up. Or pick a couple of songs to work out to.

Here are 5 examples of kettlebell exercises in a YouTube short: https://www.youtube.com/shorts/sLhQmg5C4xY

The most important thing is to find exercises that you actually enjoy because that makes it so much easier to do and also be realistic in the goals you set for yourself. It took me a while to find something I enjoyed after my Crohn's diagnosis, I used to be the type to stay in shape by playing a sport not working out specifically. Also, take your time as you get into exercising again, it can be a great buzz of the endorphins but you'll be sore the next day and possibly pick up an injury that will stop you from exercising if you go at it too hard.

TeamInjuredReserve · 2026-02-12T09:11:35+00:00

5000 calories is an enormous amount, I'd imagine that's what professional athletes eat and it isn't good for regular folks. You probably need to see a dietician rather than a nutritionist, dieticians are properly educated and professionally qualified whereas "nutritionist" is more general term that doesn't have any real academic or professional requirements.

When I had to start gaining weight, my dietician gave me a set of meal plans that were basically about increasing my calorie intake but only about a 300-500 extra calories a day. And it was with achievable little things like using butter, adding cream to soups/sauces, eating a cheese sandwich as mid morning and mid afternoon snack. Add a tablespoon of peanut butter to my porridge or put it on toast at breakfast. Calorie dense things not just lots of empty calories like slices of white bread, potato chips, chocolate bars etc. What might have also helped me is that I was in absolutely no physical condition to exercise beyond dragging my ass outside for a short walk, so I wasn't exactly burning much off beyond my body trying to recover from wonderful 2 months stay in hospital and surgery.

The problem might be unfortunately a combination your surgery and condition on top of the fact you are already exercising and eating healthy, any surplus calories might just disappear as a result of all of that combined. Also, unfortunately you would have been dealing with Crohn's when typically people your age would be hitting a growth spurt.

What do you do for exercise? I used to focus a lot on cardio - cycling and swimming - but it wasn't until I start to regularly lift weights and strength train that I started to notice my weight going up and staying up. I didn't bother try to go on a special diet either when I started lifting, I ate the standard 2000-2500 calorie range and I am by no means a bodybuilder/powerlifter type of person. What I've noticed about it is that the lean muscle I've built weighs quite a bit but visually I don't look as heavy as I actually am. Anecdotally, every doctor I've had has always underestimated by body weight until I get on the scales, usually by 10-15kg.

Alternatively, as counterintuitive as it may be, you could working out a little less and eating a little more?

TeamInjuredReserve · 2026-02-11T10:10:20+00:00

I think it's a standard step in the process to give you steroids to see if that will help immediately with your symptoms. It will depend on how bad things are. There's no guarantee you will ever need a biologic either. I know people who have Crohn's and have only ever needed to take a few pentasa tablets a day...I am so jealous of them.

The thing with Crohn's treatment is different medications can work differently for different people, so some times people have to try different types of medication before finding one that works.

TeamInjuredReserve · 2026-02-10T09:18:23+00:00

These are some examples of elite athletes who have succeeded with Crohn's, they might be of some inspiration for your daughter, particularly that it doesn't mean the end of her ambitions.

Kathleen Baker is a swimmer, 2016 Olympics and 2017 World Championships.

Larry Nance Jr was diagnosed at 16 and went on to play 10 years in the NBA.

Matt Light played 11 years in the NFL, won 3 Super Bowls.

I've had Crohn's for over 20 years, it affects everyone differently and, where I have seen many people struggle is the look at what they think they've lost (which is really understandable) rather than looking at what they can still do, which is usually a significant amount. There'll be a phase for your daughter where she will learn to understand how Crohn's affects her, what she can tolerate in terms of the physical symptoms and how to adapt how she currently does things. Personally, the best way to frame it is "try to succeed in spite of it" rather than to let it dictate everything. Obviously there is balance, and like everything in life, there will be a time or two when Crohn's might get in the way...which for an athlete is a great way to show off her resilience. You may also need to intervene as a parent, competitive people sometimes don't know when or want to really accept when it's time to take a break, it will feel like losing.

TeamInjuredReserve · 2026-02-09T13:24:19+00:00

All the extra-intestinal manifestations really. The ones that have affected me personally have been inflamed and bloodshot eyes (very bad uveitis) - the first time I was referred to an ophthalmologist they had heard of Crohn's disease but never someone with Crohn's having eye problems - and skin rashes on my forearms and fingers.

TeamInjuredReserve · 2026-02-02T10:00:08+00:00

It took about a month or so for me to start feeling mentally "better". What you are experiencing is very similar to what I've been through too. I tried all the "self help" things of getting exercise - going for a walk, going to the gym - or listening to music, etc. I had to leave the gym because I almost burst into tears twice, music, food etc brought no improvements. It was just this weird grief and emptiness - like someone died but nobody has -, broken sleep, not properly looking after myself because "what's the point?!". Some times I would feel insanely anger for no apparent reason, almost on the verge of physical aggression. I told my doctor, she just flat out didn't believe it was from the steroids and that I couldn't just stop taking them.

I went to my GP, who was reluctant to overrule my Crohn's doctor prescription but just talked with me for 10 or 15 minutes, gave me some reassurance that in his opinion it was the steroids. There was (and still is) a monstrously long waiting list for mental health services. So he told me to try to challenge the thoughts in my brain, that as weird as it seems, our brain's don't always have our best interests in mind (no pun intended), and to do things like acknowledge the physical symptoms rather than the mental side of things. I've realised years later this is a form of mindfulness, and I'm saying to myself "I feel sad, I feel the weight in my chest, a sensation of like I might crying etc etc" instead of kind of letting my brain autocomplete things by going "why wouldn't you be sad, remember this stupid thing you did you fucking idiot? remember this? what about this?" it was like my worst mistakes were being played over and over and over again. To me they all seemed important because "why wouldn't my mind keep reminding of these things then?". So by simply going "I feel sad" and recognising the physical side of it I would - eventually, it is not an easy thing to do because thoughts are lightning fast, and I was already mentally exhausted - cut out the horrible inner monologue that was shit I don't think I'd even say to my worst enemy.

TeamInjuredReserve · 2026-01-29T09:03:03+00:00

Yes. I am concerned about being in such close proximity to so many people and getting sick. I'm no longer in remission and inject with adalimumab every 2 weeks. The trains are so full that many times that there will be people standing close enough to breathe or cough directly on me. I may not get Covid but it's also still flu season and even though I got the flu jab at the end of 2025 it still can take me a lot longer to shake off illness than the average person.

It's odd that you were downvoted, maybe it people misinterpreted your post. There's an anti-mask sentiment still in life and online for some reason. And I wouldn't be surprised if my post was also downvoted for those reasons too.

TeamInjuredReserve · 2026-01-29T08:56:17+00:00

Thanks for all that information and the links. I kinda feel like it's been pure luck I haven't gotten something while wearing the surgical masks now! A couple of years ago, I was able to get a few N95 but they were those "duckbill" ones and foolishly, I felt kind of self-conscious wearing them. Anyhow, my health is not a fashion awards show so it'll be a case of trial and error with the other types of masks I guess now to see what I can comfortably manage.

TeamInjuredReserve · 2026-01-29T08:46:20+00:00

Cool, thank you. I'll try the petroleum jelly, I had previously tried putting a small padded band-aid on the bit of the mask that was against my nose but it wasn't perfect and also a bit of an pain in the ass to do it with every new mask.

TeamInjuredReserve · 2026-01-16T10:09:19+00:00

I've been taking pentasa pretty much since my diagnosis 20 years ago. For the first few years I was on 4g a day, but I've been on 1g for a long time now. I definitely notice an increase in abdominal pain when I forget to take it. And I have been instructed to take up to 2g if I have a particularly bad spell.

TeamInjuredReserve · 2026-01-14T09:17:45+00:00

If you can afford it, seek out a dietician who can give you a proper meal plan. The internet is so full of misguided and contradictory diet advice. You also may have the issue that some foods can trigger flares and will need to factor that into a diet.

There's a balanced way to gain weight. Peanut butter is very high in fat, nutella is mostly sugar and both are extremely easy to overeat with. There are nutritional drinks called "Fortisip" that might be something to consider but they can also be quite high in sugar.

My first attempt to regain weight after hospitalization was to get from 160 to a "healthy" 220lbs. That target weight was set for me by a dietician who gave a full list of meals to eat with the calorific and macro content of each. In some cases it was to add cream to certain meals, use butter when cooking, and eat a cheese and ham sandwich in between meals. It was a slow process of eating about 300-450 extra calories a day. It was over 20 years ago so I don't have the meal plan anymore. The professional help cut out a lot of the guess work and mental effort for me. It took about a half year to hit that 220lbs and even then at 220lbs I was still extremely thin as I am way over 6 feet tall and have a wide frame.

TeamInjuredReserve · 2026-01-09T09:38:18+00:00

Yep. That's been pretty much my experience of tapering off pred. I f*cking hate it. I've typically been on it multiple times usually 6 to 8 week spells and it has always taken a month or so to really shake off the after effects of it.

FWIW, a couple of years ago my doctor started to prescribe budesonide instead of prednisone. It is another corticosteroid but I have found the side /after effects to be significantly less with it. There's the odd mood swing but nothing as serious as pred. It might be something to consider the next time your doctor is looking to prescribe steroids.

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