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Patients Crohn's disease

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Topic of the discussion

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Member Carenity • Community manager
Posted on

Hi Carenity Members,

I am hoping that the community here at Carenity with Crohn's Disease will use this forum to post what life is really like when living it with Crohn's Disease.

Please post your story about living with Crohn's Disease.

Include information that you feel would be important for a newly diagnosed person, family member, or caregiver to know.

The goal is that this discussion turns into a useful part of the forum where new users, current users, family members, and caregivers could come for helpful information regarding what life is like for those living with Crohn's Disease.

Through a community we are stronger.

Beginning of the discussion - 7/10/18

What is it really like to live with Crohn's Disease?
3

Member Carenity
Posted on

It feels so good to be able to talk about this!

What is it really like to live with Crohn's Disease?
5

Member Carenity
Posted on

when I first got diagnosed with Crohn’s disease I must admit that it felt like a death sentence. I have always been an optimistic person and I still consider myself to be optimistic but I also have to be realistic. Living with Crohn’s disease makes every day a challenge. I get fatigued so easily that I can barely do every day mundane tasks.  If I have to go out to the store I have to make sure that I know exactly where the bathrooms are located and I try not to spend more than 30 minutes anywhere. I have been hospitalized more times than I can count. Unfortunately going to the ER you have to deal with emergency room doctors who are not thoroughly educated on Crohn’s disease.  Due to my frequent ER visits I’m treated as though I am an addict just looking for pain medication. It’s not fair. Just because I look OK on the outside does not mean I feel OK on the inside. I have to advocate for myself every step of the way. I know my body better than anyone and if I feel it’s necessary to go to the emergency room it’s because Something is seriously wrong.  The most frustrating part of having Crohn’s disease is it’s impossible to make plans and commit to events ahead of time. I never know how I’m going to feel so I hardly ever commit to any type of social gathering.  My family is constantly worried about my health and knowing that I am wearing them gives me a lot of stress and anxiety also. Stress and anxiety are your guts worst nightmare. The anxiety manifests it’s self through stomach pain. Sometimes I feel like I’m just waiting for the other shoe to drop because from what I understand It’s only a matter of time before another issue arises.  I’m currently taking Humira by injection every other week but it certainly hasn’t put me in remission or help with my symptoms much at all. The only thing it definitely does do is make my body susceptible to any and all sicknesses such as the flu. I’m constantly sick but thats a risk I take because I want so desperately to go into remission. Friends and family are great support network’s but I have lost many friends because I’m not reliable.

What is it really like to live with Crohn's Disease?
3

Member Carenity
Posted on

Maggie I felt like I was reading  my own story, I can totally relate to EVERYTHING you said, I too have all the same issues. It might sound terrible but I’m glad I’m not the only one feeling these feelings and symptoms. Nice to chat with others. Hang in there take one day at a time. I do everything I can on days I feel well, and days I don’t, I have to just rest, do to such body and joint aches. Most people do not understand the complexity of this very unpredictable disease. 

What is it really like to live with Crohn's Disease?
3

Member Carenity
Posted on

Thanks for your comment.  It’s helpful to have the feeling of not being alone!

What is it really like to live with Crohn's Disease?
3

Member Carenity
Posted on

So glad to know I am not alone!! My family doesn't really understand what I am going through. 

What is it really like to live with Crohn's Disease?
2

Member Carenity
Posted on

When I was first diagnosed in 2016 we caught it in its early stages so it was not bad. I remember if I ate something that my stomach would hurt really bad to the point that I would not be able to stand. I eventually went to urgent care when I started to see blood in my stool. They sent me to my primary care who sent me to my GI doctor who has been with me through this long struggle of a journey. I started off with a mild Crohn's so it was pretty much a don't eat this and take your meds and you should be okay for the most part. Then it made it to the point where my stomach hurt all the time. I have failed multiple biologics due to anaphylactic shock and the Crohn's has spread to my large intestine too (at first it was just in the small bowel). Now I am swollen in my hands and feet often, I have severe migraines, I am no longer a candidate for surgery because of scar tissue inflammation, I am constantly nauseous, when I wake up every morning I feel like I got hit by a bus, when I eat I almost immediately need to use the restroom , in car rides I try to make myself sleep because I will have trouble breathing or I will need to use the bathroom many times or swell, I am bloated often, and if I don't have the ability to eat a salad soon without retaliation I might explode. A few months ago I was on a high dose of steroids and it caused a lot of issues to where my whole body became swollen for months if someone barely even touched me they might as well punched me in the stomach. I lost my ability to stand for more than 5 mins with out pain, then it got hard to breath, without pain, then I had so many cramps and muscle spams my muscles got so weak I needed a walker and help to stand. I have been in physical therapy for a while now and of course no one really understands what I am going through so I a depression and anxiety so I have to go to counseling too. Even though I am getting better I still have trouble walking, breathing, keeping my balance, dealing with the pain of my stomach, migraines, swelling, arthritis, and battling depression and anxiety everyday and it sucks.

What is it really like to live with Crohn's Disease?
Member Carenity
Posted on

@Hidden username you are not alone. how are you doing? 

What is it really like to live with Crohn's Disease?
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Member Carenity
Posted on

@Hidden username Thank you for sharing. I can definitely relate to being worried to eat anything outside of home because your insides can react within minutes.

Have you noticed any foods affect you worse than others? For me anything carbonated, fatty, or even caffeine can set me off quickly! I try to figure out the good foods that I normally don't react bad to... or have more of an immediate nauseated / painful feeling, which have been bananas, peanut butter and potatoes without skin... nothing with too much fiber.

What is it really like to live with Crohn's Disease?
1

Member Carenity
Posted on

@Hidden username‍  You're are welcome!

Yes any veggies that haven't been cooked really soft will immediately make me sick, as well as diary, fried foods, and if I eat strawberries and grapes on an empty stomach it does not go well for me.  Then there are times my body decides it just doesn't like food that day. As far as drinks I mostly drink water and gatorade if I am sick because caffeine and carbonated drinks cause me to feel bloated or nauseous.  The safest thing for me to eat normally is pasta with red sauce as long as people don't put butter or cream in it (for some reason people forget that butter is dairy...).