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Newly diagnosed with Crohns

Location
WV
I was diagnosed with Crohns disease in May. I am still having tests done. I have had Iritis four or five times in a 10 year period, arthritis several places, but, no one had connected it to Crohns until now. I am wondering what treatment will work. So many different ones. Also, thinking of going to a major hospital like Cleveland clinic for second opinion.
 

EmilyHGates

EmmyGates
Location
Georgia, USA
Hi Lojo,

I’m sorry to hear about your diagnosis, but the good news is that it means you’re finally headed closer toward solutions. Getting a diagnosis is half the battle early on. I do suggest going to Cleveland Clinc, Mayo, etc for a second opinion and a treatment plan. When I was finally diagnosed, my local dr had me on 60 mg of prednisone plus 20 other pills daily, and I was 80 lbs (I’m 5’8” and had lost 40 lbs since symptoms onset), for over 1.5 years. This caused so many issues and I was still very very sick. I finally went to Mayo clinc and they put me on a Med that helped more than the other treatment. Next I went to Emory bc it was near my home, and my GI there ended up getting me into remission with a biologic and I’ve been on it for 5 years now. I now have my infusions at a local hospital and see a local dr for maintenance; however, once this Med stops working for me I will definitely go back to Emory, Cleveland or similar hospital for the next steps- I do think they are more knowledgeable about the treatment options vs local or smaller GI’s considering their larger funding and patient load which has enabled them to learn more.

I highly suggest seeing a Registered Dietician, mental health professional, and immunologist to ensure you are treating the whole disease, as the crohn’s itself can cause many other issues like depression, poor diet, etc, and comprehensive treatment is ideal. Helping family members accept and understand my disease has been one of the hardest factors and initiators of severe anxiety for me, and there are many resources to help them cope as well. Stay positive and know you’ll be better soon- hugs!

All the very best to you,
Emily
 
Hi LoJo,
Sorry you have been diagnosed with Crohns. My 16yo daughter was also diagnosed in May. She is currently being treated with Exclusive Enteral Nutrition (EEN). She has special formula for all meals and snacks, no other food except bone broth and jelly. She is 5 weeks into it and so far the signs are good for remission, but it's early days yet. It's not super fun but it means no steroids. Next week she start to gradually reintroduce food. She may start immune modulation drugs soon also.

There is a lot of current thought on using diet as a remedy to heal the gut.

Good luck.
 
Location
WV
Hi Lojo,

I’m sorry to hear about your diagnosis, but the good news is that it means you’re finally headed closer toward solutions. Getting a diagnosis is half the battle early on. I do suggest going to Cleveland Clinc, Mayo, etc for a second opinion and a treatment plan. When I was finally diagnosed, my local dr had me on 60 mg of prednisone plus 20 other pills daily, and I was 80 lbs (I’m 5’8” and had lost 40 lbs since symptoms onset), for over 1.5 years. This caused so many issues and I was still very very sick. I finally went to Mayo clinc and they put me on a Med that helped more than the other treatment. Next I went to Emory bc it was near my home, and my GI there ended up getting me into remission with a biologic and I’ve been on it for 5 years now. I now have my infusions at a local hospital and see a local dr for maintenance; however, once this Med stops working for me I will definitely go back to Emory, Cleveland or similar hospital for the next steps- I do think they are more knowledgeable about the treatment options vs local or smaller GI’s considering their larger funding and patient load which has enabled them to learn more.

I highly suggest seeing a Registered Dietician, mental health professional, and immunologist to ensure you are treating the whole disease, as the crohn’s itself can cause many other issues like depression, poor diet, etc, and comprehensive treatment is ideal. Helping family members accept and understand my disease has been one of the hardest factors and initiators of severe anxiety for me, and there are many resources to help them cope as well. Stay positive and know you’ll be better soon- hugs!

All the very best to you,
Emily

Thank you! Sounds like good advice!
 
Location
WV
Hi LoJo,
Sorry you have been diagnosed with Crohns. My 16yo daughter was also diagnosed in May. She is currently being treated with Exclusive Enteral Nutrition (EEN). She has special formula for all meals and snacks, no other food except bone broth and jelly. She is 5 weeks into it and so far the signs are good for remission, but it's early days yet. It's not super fun but it means no steroids. Next week she start to gradually reintroduce food. She may start immune modulation drugs soon also.

There is a lot of current thought on using diet as a remedy to heal the gut.

Good luck.
Thank you! Good luck to your daughter.
 
Location
WV
Hi Lojo,

I’m sorry to hear about your diagnosis, but the good news is that it means you’re finally headed closer toward solutions. Getting a diagnosis is half the battle early on. I do suggest going to Cleveland Clinc, Mayo, etc for a second opinion and a treatment plan. When I was finally diagnosed, my local dr had me on 60 mg of prednisone plus 20 other pills daily, and I was 80 lbs (I’m 5’8” and had lost 40 lbs since symptoms onset), for over 1.5 years. This caused so many issues and I was still very very sick. I finally went to Mayo clinc and they put me on a Med that helped more than the other treatment. Next I went to Emory bc it was near my home, and my GI there ended up getting me into remission with a biologic and I’ve been on it for 5 years now. I now have my infusions at a local hospital and see a local dr for maintenance; however, once this Med stops working for me I will definitely go back to Emory, Cleveland or similar hospital for the next steps- I do think they are more knowledgeable about the treatment options vs local or smaller GI’s considering their larger funding and patient load which has enabled them to learn more.

I highly suggest seeing a Registered Dietician, mental health professional, and immunologist to ensure you are treating the whole disease, as the crohn’s itself can cause many other issues like depression, poor diet, etc, and comprehensive treatment is ideal. Helping family members accept and understand my disease has been one of the hardest factors and initiators of severe anxiety for me, and there are many resources to help them cope as well. Stay positive and know you’ll be better soon- hugs!

All the very best to you,
Emily
Thank you! I appreciate the advice and plan to look into it.
 
Location
WV
I have been taking Humira for two months and I am feeling good. I am able to eat most foods and have an increased appetite(I will probably gain weight, but, don't need to). Before I started taking it, I was treated for H. Pylori, which was discovered during an endoscopy. I was being checked for acid reflux and started taking medicine for that. About two weeks after the antibiotic treatment for H. Pylori, I had a flare up of arthritis pain in my foot, my hand joints, and my neck. I ached all over. I ended up getting a pred pack, which worked immediately. I started Humira two weeks after that. I was actually feeling better after those treatments and before Humira. Keeping my fingers crossed. I might add that, my symptoms were not the typical Crohns signs . I had arthritis flares, constipation, and eye pain (Iritis). I had an ulcer in my colon/ilium; some mouth ulcers, etc. No stomach or abdominal pain, and, no diarrhea. Also, lots of body aches, especially while sleeping. I had to get up and move a lot. I only slept an hour or two at a time. Once I moved around, I could go back to sleep for another hour or two.
I enjoy reading this forum, but, some articles are confusing and beyond my ability to understand(the medical terms and studies). However, for the most part, it has been helpful and reassuring.
 
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