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Patients Crohn's disease

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Topic of the discussion

Member Carenity
Posted on

Feeling lost. So much for making friends

Beginning of the discussion - 2/19/19

Feeling lost with Crohns
Member Carenity
Posted on

@Hidden username‍; I hope you are doing OK.

What is bothering you? I know chrons is a lot to deal with! Been dealing with it for a while now with my daughter... please reach out and talk to others if you need assistance. 

Feeling lost with Crohns
Member Carenity
Posted on

@Hidden username‍ I just reviewed your profile and saw you have been diagnosed since a child. My daughter was diagnosed at 12. Hope we can connect.

Feeling lost with Crohns
Member Carenity
Posted on

I have been having issues for 2 years been through an infection then gallbladder removed now im told I have chrons. I have good days n bad. My first medication I was algeric to now waiting for another medication to be approved to help me. What I get frustrated about is my spouse doesnt understand the pain I'm in n y sometimes I dont want to eat alot. I have lost alot of weight do to this. I get frustrated when no one understands what I'm going through. I'm trying to find my foods that dont bother me but right now it's a eat n hope it dont hurt. 

Feeling lost with Crohns
Member Carenity
Posted on

@Hidden username everything I been flaring for over a year i lost my my kids my career everything that was important to me ive had numerous doctors tell me they cant help ms

Feeling lost with Crohns
Member Carenity
Posted on

@Hidden username dont give up... keep pushing. I am so sorry to hear that you have been in a flare for over a year and lost your kids and career. Ar you going to a doctor that specializes in Crohn's disease?

In the end of you statement, what does the MS mean? You state they can't help MS? Is that multiple sclerosis? Do you have MS and Crohn's disease?

Feeling lost with Crohns
Member Carenity
Posted on

I was just diagnosed this week. Totally lost. I understand as i am finding others do not seem to think this disease is a big deal but its scaring the crap out of me. No one stops and thinks that you cant eat without being scared you will get sick. I know alot about food as i have been a vegan for a year but its hard to even know what i can and cant eat. I had white rise covered i squash soup and avocado this evening. Afterward i was overly full and started to get pains. I have only been on my meds for two days. Not sure I am ready for this long road. I have travel plans i dont know if i can keep this is truly an awful very silent disease to those who dont get it. Very scared about this whole chg. Thx for listening. 

Feeling lost with Crohns
Member Carenity
Posted on

I have also been recently diagnosed with Crohns Disease. I found out after delivering my daughter who is 2.5 months old. They are doing more test to verify it's in the small intestines. And then I will have to start injections or infusions. This is a crazy life changing event and currently my whole body is achy with moderate abdominal and back pain not sure if it's getting worse. They did another stool sample to check the inflammation and the number was in the 700s and normal is 50 so not sure how severe. Just a little scared and this sucks. If anyone can give me advice, feedback or help that would be great. Thanks

Feeling lost with Crohns
Member Carenity
Posted on

@Hidden username dont give up. I am so sorry to hear everything that has happened.

May I ask why you feel that you have lost your kids? Do you mean your relationship with them?

Feeling lost with Crohns
1

Member Carenity
Posted on

@Hidden username sometimes in addition to the disease, there are psychological and emotional effects that also should be addressed but are often overlooked.

Please reach out if I can help.