Lol I’ve loved milk since a kid and I’ve never stopped drinking it. Never was diagnosed lactose or anything. Always felt fine and in fact I think it helps solidify my stools a bit and calms my stomach potentially (just anecdotal)
Hi all, I was recently diagnosed with Crohns last year. Fatigue has been my biggest enemy. As someone with a background in exercise research and an interest in exercise and fitness, I was wondering what are your experiences of living with crohns and exercising? Does it impact your fatigue or any other symptoms in any way? What sort of exercise do you all do?
Research in this area of exercise and IBD is quite limited and it would be interesting to see your views. Probably our experiences could start a direction for research.
I was diagnosed with Crohn’s when I was 20, I’m now 32. Back when I was diagnosed I was on steroids and then moved away from one city to another without management and assumed as my Crohn’s wasn’t flaring up I was ‘fine’. I couldn’t have been any more wrong.. around 6 months into no meds I ended up having a hole in my gut and I ended up in hospital for 6 weeks - luckily this hole healed pretty swiftly on its own (nurses were surprised it healed on its own and was shocked I lived) but I had a whole recovery ahead of me. From around the ages of 21-30 I was put on Azathioprine. Since 30, my specialist has completely taken me off meds as my Crohn’s is well managed and I’m providing them with a calprotectin sample every 3 months.
Every sample has come back under 25.
How is this for the long-term? I feel fine and have felt fine since coming off meds but I always have that looming dread that I’ll end up with a hole in my gut again. There were no signs, no symptoms - it just came out of the blue from not being on meds. So now the whole not being on meds and providing samples has me extremely cautious….
I’m seeing my specialist next month and will discuss this with them for long-terms goals with my health/body but is anyone else in this position?
Has anyone here experienced having persistently high B12 levels despite not taking any B12 supplements? This has been the case every time I have my bloods checked, like around 1000pg/ml up.
Should I be worried? My GP kept brushing it off that it is normal 🤷♀️ and some would say it is just because I have Crohn's 🤷♀️but I don't think so. I don't know if I am just paranoid because I work in healthcare, I am afraid there might be something wrong at a cellular level. I am just perpetually tired, so I am thinking that my cells don't absorb B12 hence being high in my blood. I don't know what else to do as things are just so frustrating.
I was wondering if the cause of fatigue is because you have a condition and your body deals with it 24/7 and it requires energy, the normal amount of stamina for a person with no condition to spend a day without fatigue is not enough and therefore just a little thing such as taking a shower drains you or it's just inevitable? Will working out help with it or just make you more tired?
I’ve been on budesonide for eight weeks and have four weeks left. I have noticed that I have been getting blurry vision but it’s not the same every day. Some days I hardly notice it but there are other days where it is bad enough that it’s very noticeable. Has anyone else experienced this either on this steroid or any other Corticosteroids like prednisone? Did it go when you finished the course or did you have to stop because it was causing you problems?
Just wondering if anyone else experiences this too? I wonder if it’s my intestines pushing down on my bladder more, especially as I’m more likely to get blockages due to stricturing. I will be able to pee like every half an hour and it can be annoying especially when out. Obviously not anywhere close to being as bad as having crohns itself but just another side affect I’ve noticed.
Hi all, I had a follow up gastro appointment after my colonoscopy which really annoyed me.
I had the usual diarrhoea, cramping and joint pain starting in november which lasted 6 weeks. My calprotectin was at 670 during this time
Had my colonoscopy after my symptoms calmed down and they didn't find much and my calprotectin fell to 235 3 months after my 1st test
My gastro Dr is now saying he thinks it was an infection but I was tested for all the usual bacterias and parasites. Also no one around me got sick, I share my home with my partner and he didn't even get slightly ill. I also didn't feel like I had norovirus, I had no fever, no vomiting and just didn't exactly feel ill other than the stomach issues and joint pain.
I'm worried I'm now going to be forgotten about when I do really feel like its small intestine crohns not an infection. Any advice?
I’ve been taking mesalamine for a few years to no avail, my symptoms are daily and I have a few big flares a year. Recently, I’ve been flaring & the only way they were able to control it was prednisone, which I’ve been on for about 2 months now. I’ve been going through the process to get approved for Remicade, which is still not quiiiite approved, but should be soon. While on prednisone, I’ve felt the most normal I’ve felt in years; regular bowel movements, no debilitating fatigue, not even as many headaches as normal. I’ve been able to be social, active, and present in my life, which feels so exhilarating.
They’re tapering my steroids down and I’m scared I won’t have this kind of relief with Remicade. Obviously there’s no way to know, and I also can’t stay on steroids, but it’s hard to feel normal and know I might not feel that again. I’m also starting a new job, where I’ll have to be in office, and that’s adding to the uncertainty. Any advice, personal anecdotes, or kind words are appreciated!
I just went on a first date with someone yesterday, and I see a lot of horror stories on here about dating with disease, and I finally had my own! AND IT WASNT THAT BAD!
The topic of Crohn’s, I usually talk about it as soon as it comes up, just because my eating looks out of place and I take a lot of pills lol.
I usually get very different reactions, and have become completely comfortable with someone rejecting me because of it over the years, so I thought I was set! This disease isn’t a fan of “set” plan though.🙄
We ate first, then ordered a couple drinks. It was going really well! Well enough when they leaned in, I kissed them back! But in that moment, after exactly one beer, before I could even explain my stomach issues, my vagus nerve decided it was my time. So pulled back, and very politely stood up to explain I was about to throw up in a bush behind the restaurant (We were already sitting alone outside for context as to why there was no bathroom near me)!
I ran to do a quick spew, and they followed right behind me looking MORTIFIED. I then realized that I just ran away at lightning speed to VOMIT immediately following the kiss and they thought I was disgusted by them😭 It was easy enough to clear up and reassure them, but in the moment I felt absolutely terrible. I don’t drink often, but my stomach usually is always okay when I do lightly. It was completely unexpected, but they were completely understanding, and even drove me to the CVS to pick up my zofran that was waiting there!
Just wanted to post about it because life happens and it doesn’t always have to be the end of the world. I’ve had way worse reactions to much more minor diseases events, and now I just look at it as tool to weed out anyone who isn’t built for your lifestyle! Happy dating Crohnies🫡
Once or twice a week, I read a thread on this subreddit with someone fighting to the death about how no, they don't need to take any meds, and no, they won't listen to the doctor, and has anyone made it without taking medication? And this is through no fault of the mods, but rather out of fear and upset, and maybe a little hardheadedness.
But to get it out the way -- you will, no matter where you are with your IBD, require medical intervention in some form. There is no way around it.
A diabetic cannot go without their insulin. Someone with vision issues cannot go without their glasses. And with IBD, you cannot go without treatment. It will not work. It will not happen.
Sure, you can maybe tough out three or five or ten years, but you will inevitably make it worse for yourself.
I know this because I did it to myself.
When I lost my insurance, I stopped taking my meds. It was super dumb of me, because there are options where I live, but I was in a massive depressive state at the same time and just thought: I was FINE. I was young, I didn't need to take my meds. I had had surgery to remove all the bad parts already. Why did I need to take meds?
So I didn't. I went five years off any Crohn's meds. And I thought I was great. I was marathon training! I was lifting! I could walk 10-20k steps a day, and eat whatever, and go on trips. Never mind the loading up on Imodium, and the fatigue, and the crazy anxiety, my body was totally fine.
And then it crashed and burned fairly spectacularly.
In the midst of a training run, I basically just shit myself. No warning. Like my colon straight up gave up. It was also raining, so I had to walk back -- I probably should have called my husband but I stopped thinking -- in the pouring rain, my leggings all fucked up. I got home, stripped in the shower, and shook.
And shook.
And shook.
My heart rate refused to go down, and all I could think was "wow, I'm going to die." I later learned this is called 'an impending sense of doom', which is a fairly serious harbinger in medically precarious patients.
I tried to ignore it, went to work, couldn't stop shivering and my Apple Watch tracked a heart rate of 100+ all day -- and my resting HR at the time was in the 50s.
The next day I got an emergency appointment with my family physician and she sent me to the ER. I was going into septic shock. My body, without medical intervention, was basically cannibalizing itself.
I had two emergency scopes and had to go on an intense steroid-antibiotic-medication regimen.
But that's not even it.
Despite weight training, my muscles and my joints and my bones were fucked. My GI said my bone density resembled paper. I was supremely malnourished.
My teeth were FUUUUCKEEEEDDDD. I had cavities between each tooth. I ended up getting nearly $15k of dental work done. Despite having impeccable oral hygiene. Even the dentist was a bit surprised at how bad they got because it's apparent I floss and brush regularly.
I had to get a new vision prescription, because my eyesight went down the drain, too.
A year after starting my new meds, my hair stylist commented how much healthier my hair was.
I had a pretty bad stomach ulcer.
I had been diagnosed with Crohn's in my small intestine and had an ostomy bag and a bowel resection, as well as several fistulotomies. Thankfully my abscess didn't reopen, but my Crohn's returned in my colon, which was new. I had a healthy(ish) one before. So, I basically moved it to another location. I'm now more at risk of a j-pouch.
"Please stop fear-mongering," you're saying, because you want to believe this won't happen to you. But it's not fear mongering. It's the truth. It is a devastating disease.
An ounce of prevention is worth a pound of cure. And look, no one is bouncing up and down with excitement about weekly injections, or 8 week infusions, or scopes, or moonface, or any other side effects. Treating your disease is not a fun time.
Nearly dying from it will be worse. It will be more painful, it will hurt more, it will cost you more if you don't have health insurance, it will hurt your loved ones, it will ruin your career.
You cannot live without treatment. The reality of the disease is that hundreds of years ago we'd all be far worse off, dying early, living miserably. We are living in a time with monumental movement towards better treatment. What IBD treatment was like when I was first diagnosed is light years behind what it is now. And it's only improving.
After the above disaster, it took awhile, but I am back to myself. I still lift and walk a lot. I am no longer allowed to run more than 30 minutes, so my foolishness took away something I really enjoyed. I watch my diet a bit more carefully, but I really don't experience much pain. I have one or two BMs a day, no new cavities, my bone health and muscle health have improved.
Lastly, if you really don't believe me, please stop wasting the time of the people on this subreddit. I, like many others, choose to answer questions from scared and unsure fellow Crohnie's because I remember what it was like at the start. If you feel like our advice or information doesn't pertain to you because you took Intro to Bio, then go somewhere else.
Hey all, I was on Skyrizi for 6 months before it stopped working for me. Got my first two doses of remicade, I'm on week 3 and I'm pretty strict to avoid triggers/processed/lactose/gluten but once or twice a week I need a fricken break so I cheat. I know the first 6 weeks are crucial so in really trying to eat clean but how much is it actually gonna affect me if I cheat a few times a week?
Hey all, Crohn’s here since I was 18. 40 now. Male. Currently on the new generic replacement or whatever for Stelara since it stopped being covered.
Stelara wasn’t seeming to help either. But, my symptoms for several months have been really bad bloating a couple hours after I eat. I get hard spots that roll up and I can gently push them and my stomach will growl loudly and the spots will retreat. It does this cycle for several hours after meals.
I’ve had a few NG tubes from blockages, a “fair amount” of scar tissue at the terminal ileum area, and constant diarrhea. Crohn’s has made me anemic and the only way I can get an iron intake is through IV iron at the hospital. I know I’m low when I start getting HORRIBLY bad/life questioning leg cramps on the inside of my knees thrust run up to my groin. I have to watch how I get up from a chair, couch, bed, etc or it can throw them into a cramp. The absolute worst cramps I could possibly imagine - they make me nauseous and break into a sweat. And they’ll last for upwards of 5 minutes.
I’ve been taking some peptides, with hopes for some relief. I saw some improvement after a couple weeks, but it stopped and I’m now right back to where I was.
Just tired on not really being able to eat without pain coming afterwards. I routinely do 24+ hour fasts to give my stomach a break. I don’t eat raw greens (roughage), peelings, nuts, seeds, etc. My weak spot is sugar - I’m wondering what would happen if I just tried cutting it out completely.
Anyone ever had those hard spots of stuck gas that cause such constant pains? Suggestions on relief from them?
Appreciate the responses. Good luck to all with this sucky diagnosis!
Hi all,
I’ve been in remission for 3 years, but have been having more symptoms in the last few months. It is continuing to escalate but it’s manageable without steroids right now. I’m having a colonoscopy & pillcam 6/24. My concern is that I’m leaving the country for 3 weeks the next evening (I know it’s tight! It had to be this way). I’m worried that 1. my symptoms will continue to escalate into a full flare by that time and 2. they might find inflammation on the scope that warrants a course of steroids but I’ll be unable to pick them up in such a quick turnaround. I want to be able to enjoy my trip with minimal stomach trouble…Would it be reasonable to explain this to my doctor and request a course of steroids that I’d save for my trip abroad? I wouldn’t want to take them before my scope so it doesn’t mask anything. Just wondering if this is something they might accommodate before I take up our time calling. Thanks so much!!
Even in subs about various digestive conditions (Crohn’s, IBS, SIBO etc) where you’d think people just put everything embarrassing out there, I don’t see a lot of talk about the awful smelling farts/gas? Is it just me who deals with this? 🫣😂 It’s often seen as a funny thing but honestly this symptom is debilitating and completely creates fear over being around people. For anyone dealing with this how have you dealt with it when it comes to having a flare up of awful gas when dating someone or being in a relationship?! It’s something I dread and it puts my off trying to date even tho I want to 😢
Hi Everyone! I was diagnosed with crohns Jan2025 after having some bad bloody bowel movements I thought were from my endometriosi. I have now been on Skyrizi for over a year. Question, does anyone else get incredibly itching, I’m talking want to rip my skin off, can’t stop itching? This has been happening to me since I started the on body injections. I’ve reported it as an adverse event but they said since it’s happening sometimes weeks after my injections that it’s not an allergic reaction and to just taken an antihistamine when it happens. is this happening to others? is this some sort of flare? It’s happening now but actually started getting hives. I am under a bit more stress than normal (moved across country, started a new job, and graduate courses started all the same time).
Hi everyone..
So I'm new here.
I'd been unwell for a few weeks, lower right pelvic pain, that eventually became my abdomen as well. It was torture standing up and walking- I'd have to be holding my stomach and walk hunched over and slowwww.. I'd have to hold the right side of my pelvis when peeing too..
Doctor wasn't really listening, so I presented to the A&E Monday afternoon.. blood test showed an infection that was "off the charts". CT scan showed 20cm of inflamed intestines, and a "small hole".
I've been on IV antibiotics (PipTaz-AFT).. And since yesterday I've been able to sit up in bed without the pain! Wow!! Last night I had a solid sleep (well as solid for a hospital haha)..
I went from being told I'd need emergency surgery to a "wait and see" approach.
Only issue is, the doctors here aren't answering my questions either.
I have an international flight on June 11. All they're saying is to cancel the flights.
I've asked them what would happen if I flew, explained it's not so easy to cancel with the plans that have been made etc.
Clearly had I never presented to the A&E I'd have boarded the flight anyways but been much more worse for wear.
Is air travel truly an issue in our situation? I asked how big the "hole" is, and have just been told it's "small", and there's a small pocket of fluid, but my body has walled it off.
They won't do a repeat scan to see how things are prior to discharge.
I’m going in for my first bowel resection as I have a narrowing in my terminal ileum. I’m having constant contractions-like pain currently which comes and goes which the doctors say is due to the scar and needs to be removed. I had inflammation and fistulae 5 months ago but inflammation has come under control (CRP 4) and fistulae hopefully has reduced too. I’m not sure yet if it’s going to be laparoscopic or open surgery as the surgeon would probably say after the scheduled MRI. I am terrified of the after effects post surgery and don’t know what the recovery looks like. I am a software engineer and work remotely so how many days would I need to take off? What did your recovery look like? How likely is it for me to end up with a stoma bag? When were you able to be independent and eat normally? I’m truly terrified. Some encouragement please 🙏🏻🥲
i've had this disease for nigh 30 years. i had my colon removed in December. over the past couple weeks my providers think i may have gastroparesis. i searched the sub, and found some others who have gastroparesis along with crohn's... curious if anyone out there would be willing to share their treatment plan... i'm worried this will be more life-altering than crohn's has been.
next up for me is a gastric emptying study. i already had a gastrografin done... ugh.
I was diagnosed with severe Crohn’s disease many years ago. And I’ve been on Entyvio for over a year and a half. But in the last several months I’ve been diagnosed with two new issues: active perianal Crohn’s disease and active Crohn’s disease in mouth. MRI & CT show inflammation in both intestines. ER staff say active disease, but GI says scans are insignificant. Labs look normal (shocker). And I have all symptoms I had in the past during active disease that are getting worse over time.
I’ve been trying to get GI to switch my medication for months, but GI refuses to do so or diagnose whether my disease is active or not without a colonoscopy. My GI will say in the same conversation that I’m likely in remission, but symptoms and perianal activity suggest active disease. So I’m confused and concerned.
Does this sound right to you? Do you really have to get a colonoscopy to switch meds or in this case declare active disease or remission?