Community Forum

Hi, 
My name is Alyssa and I was diagnosed with severe Crohns a little more than a week ago. I had been experiencing symptoms ranging from abdominal cramps to mouth sores and skin ulcers. I always thought it was my usual or my norm to get up and throw up every day for the past 2 years as I also have bad anxiety.
Initially, getting this diagnosis, I thought nothing serious of it but as the days went on, it's really starting to sink in. I am in so much pain and will be for the rest of my life. The doctors told me I had major depressive disorder as well. My main trigger isn't essentially food for my Crohns but stress and hello that's my life. I am kind of irritated that I was discharged from the hospital without any mental health resources. Who does that? Gives someone a serious diagnosis like severe Crohns and pretty much has them deal with it themselves. They gave me my first infusion of Avsola in hospital and sent me home with steroids. The side effects of the steroids are no joke and I seriously want to be done taking them. I am due for my next infusion but the doctors keep giving me the run around so I don't even have it scheduled yet. It's been almost 2 weeks and today I am having a really bad flare up. My abdomen has been cramping all day and I just now started having diarrhea every 20 minutes or so. My stomach is upset, I threw up once and my mouth sores are starting to reappear and become tender again. I feel very short of breath and hope my anemia isn't coming back. Not to mention I now have a sore throat and hope that I'm not getting sick with my weakened immune system. I feel like I have no support with what I am going through whatsoever so here I am. Is it normal to have symptoms after having one infusion? Does that mean the infusion isn't working for me? Does the bone and joint pain ever subside? How can I find adequate mental health? Anyway, that's my current story. Looking forward to reading how some of you have dealt with all of this. I am just so tired of feeling guilty and like a burden to my family. There is so much more I want to say but I'll leave it at that. 

Reply posted for alyssap24.

Hey Alyssa,
I've been diagnosed with Crohn's Disease for almost 5 years and i've faced many ups and downs. The first year in a half was rough. I was 13 years old and faced all of the worst symptoms. Unfortunatley, my GI doctor at the time had me taking six different types of pills everyday up until i changed doctors. It was the absolute worst! As time went on and I switched doctors I began taking Remikade. Remikade put me back into remission when I was 15 and ever since then I've never had a flare. Anyways what I am trying to say is things get better. With time and the right mindset it will get better. I would always ashamed of my disease  when i was in highschool because i thought it made me different. But now, I've realized it is a blessing in disguise. I have learned how to become much more independant and take care of my physical and mental health. I hope things get better for you soon! Please let me know if there's anything I can help explain:)

Reply posted for alyssap24.

Reply posted for alyssap24.

Please note that having symptoms after one infusion does not mean the infusion is not functioning. Avsola can reduce Crohn's disease inflammation and symptoms, although it may take time to work. The web search results say Avsola is infused in three doses in the first six weeks. After six weeks, patients will receive infusions every six to eight weeks or four weeks for some RA patients. Follow the dose regimen and doctor's instructions. You should also call your doctor if you have any treatment queries, adverse effects, or infection symptoms.

Second, your stress and anxiety can worsen your Crohn's disease and mental health. Your diagnosis included major depressive illness. Depression and anxiety are widespread among Crohn's patients and can impair quality of life and coping. Your hospital release without mental health resources is terrible and unfair. You shouldn't handle this alone. You deserve mental and emotional health care from professionals.

Find Crohn's and inflammatory bowel disease mental health providers using these resources. The Rome Foundation Psychogastrenterology Directory lists mental health professionals with psychology and gastroenterology expertise worldwide. The Crohn's & Colitis Foundation website includes mental health and emotional well-being resources and online support groups. You can also ask your general care doctor or gastroenterologist to recommend a therapist, counselor, or psychiatrist for sadness and anxiety.

Third, practice stress-management and mental health-boosting coping skills. Examples of these strategies:

• Deep breathing, meditation, yoga, and progressive muscular relaxation. These can soothe your mind and body and minimize stress's physical and mental impacts.
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