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life with Crohn's

It's been one year since I have been diagonised with Crohn's disease. Since then my life has been up side down. When I was first diagonised by this disease I had perianal fistulas which is better compared to the one I had at the starting point but still got little abscesses coming out.

My doctor decided to give Remicade to me which I had for few months. After few infusions I am having issues with the skin rashes(psoriasis). The rashes were all over my body but Diprosone 0.5% ointment helped me out with the one in the body but hasn't shown much affect on the hands and the legs. Because of which I do light photography thrice a week.

Its been 17 weeks I have completely stopped using Remicade but I can still see the rashes coming on my body. I just had my first dose of Stelera today as an infusion and will be getting more every 8 weeks as an injection.

After joining this group, I have seen some hope and got some ideas for my future. Since, I am new to this group I don't have much idea living with crohn's disease. Like, things to do and things not to. foods to eat and foods not to. My doctor has said me I can have anything except smoking which I stopped 2.5 years ago.

Please give me suggestions so that I can handle my Crohn's disease and have a better future.
Thank You
 

valleysangel92

Moderator
Staff member
Hello

Crohn's disease is a very individual illness, unfortunately there's no one size fits all so we can't tell you what will/won't work for you, but we can try to help you figure it out.

One of my biggest tips regarding food is to keep a food and symptom diary. Write down what you eat and how you feel before and after, if there are any specific trigger foods you will see a pattern and will be able to remove those foods for a while. For some people, just eating anything is a trigger. When I'm flaring I get pain from every meal, so I tend to go on a more liquid/light diet with soups etc, but this is only sustainable for a short amount of time.

If you have pain, using heat can really help , ginger is good for nausea, I drink ginger tea, and peppermint is good for cramps.

Learning to pace yourself is another good thing, your body is constantly fighting and then trying to repair itself so you may find you have trouble with energy. Chronic fatigue is a big part of chronic illnesses , so learning to listen if your body is telling you to rest is really important.

Another important thing if it hasn't already been done is testing for any nutrient deficiencies. People with crohn's can have difficulty absorbing enough nutrition from food, so it's a good idea to have blood tests every so often to see what your levels of key nutrients like iron and vitamin B12 are . Having a nutritional deficiency can cause a whole host of symptoms and really make you feel rubbish but it's usually quite a simple fix so it's really worth checking.

If you have any more specific questions please do feel free to ask, there's no such thing as a stupid question and we will always do our best to help.
 

Lynda Lynda

Member
Location
Arizona
It's been one year since I have been diagonised with Crohn's disease. Since then my life has been up side down. When I was first diagonised by this disease I had perianal fistulas which is better compared to the one I had at the starting point but still got little abscesses coming out.

My doctor decided to give Remicade to me which I had for few months. After few infusions I am having issues with the skin rashes(psoriasis). The rashes were all over my body but Diprosone 0.5% ointment helped me out with the one in the body but hasn't shown much affect on the hands and the legs. Because of which I do light photography thrice a week.

Its been 17 weeks I have completely stopped using Remicade but I can still see the rashes coming on my body. I just had my first dose of Stelera today as an infusion and will be getting more every 8 weeks as an injection.

After joining this group, I have seen some hope and got some ideas for my future. Since, I am new to this group I don't have much idea living with crohn's disease. Like, things to do and things not to. foods to eat and foods not to. My doctor has said me I can have anything except smoking which I stopped 2.5 years ago.

Please give me suggestions so that I can handle my Crohn's disease and have a better future.
Thank You
I have learned more about Inflammatory Bowel Diseases on this forum than from ANY doctor I have visited.
I was here on this forum back in 2006 when a GI said I had Ulcerative Colitis.
In 2018 I came back here to the forum to learn more because I was diagnosed with Crohn's Disease.
I know that my Gastroenterologist is on the right track with my current treatment based on the countless posts I have read here.
The more I learn the more confident I feel about my treatment. I have been sick for 25 years but a true diagnosis can take years to figure out.
As far as reading all of the scientific studies posted here, I feel I will need 12 years of University to understand them all !!??

Take Care and Keep In Touch. 🌼
 
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