Living with Crohn's disease

[Nema]

Hi guys,
I was just posting to ask whether i could get insight into what it is like living with crohns disease and the impact it has had on your lives. I am a medical student currently doing some research into crohn's disease and i think it would be great to get insight into how it affects the persons life as i feel as thought its very important to have an idea as a doctor.

Thanks, really appreciate it!

 

[Tesscorm]

Hi Nema,

I think it's great that you're looking to see how crohns affects patients' lives - I'm sure it will give you greater insight in what patients must deal with, their difficulties and their concerns. You'll find lots of info thoughts, questions and discussions on lots of topics relating to crohns on the various subforums.

Are there specific areas on which you would like information, or specific questions?

 

[Nema]

Hi Tesscorm,
Thanks for replying! i was just wondering what general impact it had for example things they could do before but can't now, general aspects they find the hardest to manage

 

[mdd]

Ok thanks for asking. It is a struggle everyday. Everybody is different. Please listen. That's is important . I had this crohns for over 20 years the first doctor said To Get a Life!! He was a surgeon . Did not have see gastro dr. For 8 years and bleed out at work and rushed to er. It was 4th of July 1995 I got a gastro that day that found out what I had. Lots of us have more than crohns other stuff also it all adds up. Meds cose a lot of side effects that we deal with each day. Thank you maria:smile::cool2:

 

[rrhood1]

Hardest to manage for me is the overwhelming fatigue and the joint pain. During my job, I have to do property inspections. The joint pain was so bad I had to sit down and rest 15 minutes after starting.

I never catch up on my sleep - I could fall asleep these days sitting up in a chair. Fatigue is very debilitating.

Also having to watch for bathrooms all the time becomes embarrassing at times.

 

[Shiny]

Hi Nema,
I think it is fantastic that you are taking the initiative to get this kind of information; unfortunately, I don't think you are going to get a 'standard' answer. It is so different for each of us. A lot depends on the severity of the disease, whether or not currently in a flare, what medications taking, what side effects experiencing, which extra manifestations are being dealt with, etc.

Mild cases may not have many or any symptoms and their lives don't seem to be impacted. Others have bad and good periods. For some, EVERY day is impacted. The pain and symptoms make life hard to deal with.

In my opinion, if one is going to be treating patients with this disease then that person needs to listen to each individual patient and tailor treatment accordingly.

Thanks for posting and for taking an interest.

 

[Sailorluna]

Thanks for looking into this. For me the hardest things to deal with depend on the day. It really can change all the time. Yesterday (and about a week before that) I would have told you it was the joint pain. I could barely bend my right thumb and any pressure was horribly painful. Today it is easing off and I am starting to feel better.

Diet is a nightmare - things don't always make sense. Things that cause issues one day won't the next. I eat a lot of junk food both due to sugar cravings and because it digests better than most healthy food. I was traveling for work last week and had a plated lunch function. The salad, and everyone around me enjoying it, was too tempting and i caved. As anyone around here can tell you, bad things followed.

Fatigue when it is at its worse is crippling. Before i was correctly diagnosed and had my resection I would come home from work and go directly to bed and stay there until I got up for work the next day. I have two kids and they were scared. It's pretty awful to have your kids worried about you.

If you want more or have question PM me, I would be happy to help.

 

[DougUte]

Hi Nema. I had surgery in 2010 but now am in "remission". remission is not all its cracked up to be. Don't get me wrong, it is a good thing I don't have active crohns in my gut, but I keep getting these extra intestinal manifestations that drive me insane. I take medicines daily, including omeprazole (prilosec) Potassium 300 ml, 4 loperimide , Multi Vitamin, B6, B12 and Folic Acid, Magnesium 400 mg, and then Humira every 2 weeks. This does not count medicines for Essential Tremor, Depression, etc.. I feel like a walking pharmacy.

Fatigue is common for me, even in remission. I have developed a minor case of plaque psoriasis and most recently developed Enteropathic Arthritis. The joint pain is fast becoming a major concern. I wake up each morning and can hardly move. My left elbow aches every morning, my knees and ankles have trouble bearing my weight when I get up, or get out of chairs. Having Crohn's taking NSAIDS is basically out of the question. So I have to depend on tylenol or other prescription pain killers. And this stuff is happening while I am in "remission".

 

[seaofdreams]

I feel like it's really hard to articulate exactly how it affects my life because there's so much to it. Really to sum it up, my entire life revolves around my illness. My job, my house (because of the seperate bathroom and toilet), my relationship, my friendships, my moods, my holidays, my food; absolutely everything is based on how well it will allow me to manage my illness. I feel like it's shaped my entire personality.

The worst thing for me is the unpredictability of everything and not being able to be in control of my own body. A certain food can be fine one day and then like eating shards of glass the next. I may have red, itchy bloodshot eyes and diarrhea one day and then aching joints and constipation the next. It's nearly impossible to make plans because I literally have no idea if I'm going to be well or not (I'll usually still make plans and then cancel or arrive late or leave early if needed.) It's given me severe anxiety to the point where I was agoraphobic for years before I learned to be ultraprepared for everything and memorised every single public bathroom that exists in a 50km radius of my house. After working through the anxiety, I also ended up being diagnosed with major depressive disorder (which was always there but was being eclipsed by the anxiety.)

I know this is just scratching the very surface of how it impacts my life but feel free to ask me more specific questions, I'm always very happy to share my experiences and hopefully help people understand IBD better.