My story-newly diagnosed

So hi everyone! I was recently diagnosed with crohn's on Sept. 23. I've been having stomach/bowel problems for several months now. About a year ago I went to a GI doctor and they did an endoscopy to test for Celiac disease (my blood tests came back with a wheat allergy, among many other things). Thankfully I did not have Celiacs, but I do have a hiatal hernia. This started a change in my diet that would supposedly help. Well as life went on I really didn't get any better. I tried different naturopathic remedies but nothing worked long term. Back in May I developed an anal fistula and went to the doctor. My general doc sent me to a gastroenterologist. She performed surgery on me and fixed me up. Since my gut was still hurting I asked about having a colonoscopy. Finally I got in for a colonoscopy on sept. 21. She found that I had chronic appendicitis and needed surgery soon! So two days later I was in the hospital to have my appendix out. While performing the surgery my doc found a messed up part of my small intestine that was laced with fat growing webbed inside it and had severe Crohn's disease and she removed it. Needless to say when I woke up I was scared and worried. Now I'm just starting on this new journey, hopefully we finally got the cause of all the pain.
Sorry this was so long! Anyway that's my story.

Hi Luthien,

Welcome to the Forum. Sorry to hear how much you have had to go through. This sight is great for meeting people who know what you are going through. You will find lots of great information here as well.

Now that you have gotten rid of the damaged parts what medications will you be on to ward off a return of Crohn's. I had been taking Pentasa prior to my surgery and the surgeon suggested Biologics. My GI at the time thought I should stay on Pentasa. About 8 months later my new GI ran tests that found the stricturing and inflammation had already begun.

Keep well and good luck with the healing process.

Alan

Hi Luthien and welcome to the forum!

I'm sorry to hear that you had to go through surgery before getting a diagnosis but I'm glad the source has been found. After my resection I was put on 6MP and stayed in remission for 14 years. I hope you stay in remission longer. I'm also curious as to what the plan is to try and stay in remission. We have many sections on the forum for medication but we also have a section for diet and fitness as well. Keep us posted on how you're doing.

Well I went back to the surgeon today and she said my incisions look good and gave me info for a GI doctor that is supposedly the best for crohn's in the state. Now just to get an appointment.

I really hate taking medication (always have) so I want to also consult with my naturopathic doctor about natural ways to keep me healthy.

Well I can't get into the GI doctor until Nov. 20. In the meantime I am going in to see my naturopathic doctor and see what recommendations she has.

Hello there, I also found out that I had crohns the same way you did. It was a shock to say the least but I was now able to treat the pain and go on with life. The meds we take for crohns can make you scaried but it is better to treat the crohns than have more operations. As my Gi puts it, you don't want to end upin a pickle.

I hope all goes well with you.

Luthien said:

Well I can't get into the GI doctor until Nov. 20. In the meantime I am going in to see my naturopathic doctor and see what recommendations she has.

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Luthien,
wow...nov 20 is too long, she should be such a reputed doc. you compare with my son doc, her appt will be 8 weeks and later only. you are lucky
hope you find your way to good health at your naturopathic doctor

I hate to have another member joining this forum but no choice but to accept it.

Madhav

Well I saw my naturopathic doctor last week and she recommended taking a supplement called Glutagenics, for inflammation and overall digestive health. Along with probiotics and fish oil for inflammation.
She also said she can see me after I go to the doctor to discuss the medication he recommends and if it will be good for me or if the side effects may be worse then without the medication. (I tend to be very sensitive to some medications).
Oh she also gave me a natural remedy for "sadness" which helped immensely in boosting my mood which has been pretty down since the surgery and diagnosis.

Luthien said:

Oh she also gave me a natural remedy for "sadness" which helped immensely in boosting my mood which has been pretty down since the surgery and diagnosis.

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Do share! :tongue:

Brenden said:

Do share! :tongue:

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It's a homeopathic remedy, you only take it for 2 days. It was called Ignatia (for grief/sadness).

Well I had my first appointment with the GI doctor today. First he gave me a prescription for an anti-spasmodic. He also wants to have a bunch of tests done on me. Including some genotype testing. Also is going to have me get an MRI and possible a pill cam test depending on what the MRI shows. Then we will discuss medicine, he said most of his patients are on biologics.

Also I was told to eat a high fiber (gluten free) and lactose free diet

Oh I also found out that my appendix had a fistula connecting it to part of my intestine so I had an ileocecal resection

He seems like a very good and thorough doctor, and they are willing to work with my insurance so it's not a financial burden to me.

Edit: I got a call from my doctors office today, they said my MRE showed strictures. I really wasn't expecting that. Also they had to move my appointment and they can't see me until February! :ybatty: