Diaganosed 21 aug 2013

[mayU&Iheal]

Hi Everybody, Thank you all so much for sharing your experiences on this forum. It has been a great help since I was diagnosed with Crohn's this Aug. I was diagnosed with mild to moderate Crohn's Disease (I think there is some doubt in my GI's mind - he says it could even be UC). I have mild, wide-spread disease. It is in stomach, Duodenum, descending and sigmoid colon. I don't have any inflammation of TI. My symptom is mainly occasional mucous/blood with stool. The blood stops for sometimes and it's there again for a couple of days. On the days when I see no blood, it may be possible that it's just that it is not visible to me.

Since being diagnosed, I have changed my GI. The GI that I am consulting now has suggested I take mesalamine and use proton pump inhibitor. I have talked to him about LDN, and though he is not against it, he thinks it is drastic for me since I have mild disease (May be he thinks LDN as drastic because it is not FDA approved). But he has agreed to just monitor me every three months, if I don't take any medication.

At present I am not on medication but monitoring my trigger foods. I have stopped dairy, gluten and sugar. I am vegetarian, so don't want to do a SCD/ Paleo diet (it would be too restricting). Started using coconut oil for cooking and putting raw turmeric in food. I also started taking Aloe Vera inner leaf juice and Indian Gooseberry in the morning. I also take Vit D. Took B-12 injections. While being on dairy, gluten and sugar free diet I sneak in some kind of illegal food. I am leaning towards it's dairy which causes me issues, mainly cheese (the couple of days bleeding that I mentioned earlier seems to coincide with my eating a bit of cheese). But I am not sure and still closely observing.

Without my GI's knowledge (since I only started consulting him recently, didn't want to push him too much into prescribing it to me), I have managed to get a prescription for LDN. I have the LDN with me now and I can start taking them. But I have not started it yet since I am traveling to India this week for 2-3 months. I will start once I reach there and am settled. Just to know how I feel taking it I took a dose of 3 mg yesterday. May take it again today. But will only start it properly (without break) in a week or two.

One other thing is that although I have been diagnosed now, seems like I have had it for a few years. When I look back I did have some pains between 2002-2004. Didn't think much of them!! Then they stopped without anything.

Many Thanks again.

 

[ronroush7]

Welcome. I wish you the best.

2

 

[mayU&Iheal]

Thank you

 

[mccindy]

One thing you need to remember is that it is very important that both your doctor and pharmacist need to know all of the medications that you are taking, including over-the-counter medications and supplements. It is a bit concerning that you are taking a medication that your doctor has not prescribed to you, and one that he has advised you not to try just yet.
Monitoring your diet is a very good idea, but you aren't going to get a very good picture of symptom management or how any medication is working for you if you are eating foods that you know cause your symptoms to return. You should avoid all symptom-inducing foods, and you should also notify your GI of the LDN you are taking. He agreed to see you every three months if you are NOT taking medication, and it sounds like you are. Being honest with your doctor is the first step in good disease management. I know you are new to this journey, but don't second-guess the experts who are trying to help you.

 

[mayU&Iheal]

Thanks Cindy, for your suggestions. I will keep them in mind. I definitely don't plan to be dis-honest with my GI. It's just that I have only met with him a couple of times and I am not able to communicate what I think/feel. I have had the prescription for LDN for a month now, but have not really started it (just tried one dose to check). I am scared of even taking that. But I do know I will have to take some medication. I am leaning towards LDN. If I do take it, I will sure tell my GI. I like him and don't want to do anything behind his back.

 

[David]

Hi there and welcome to the community.

1. How can it be Ulcerative Colitis if there is disease in the duodenum and stomach?
2. Were biopsies done that came back for Crohn's disease or was it indeterminant colitis?
3. What form of mesalamine are you on?

All my best to you.

 

[mayU&Iheal]

Hi David, I am extremely sorry, for not replying here earlier. Just after writing I traveled to India and lost track of the post.

I am still in India and may continue here for a few more months (I am India born, normally residing in Australia since last 7 years).

To answer you query

1. I have consulted 2 GI's. The first one said it is probably Crohn's. The second says the colonoscopy images looks like UC, but it could be Crohn's, since I have inflammation in duodenum and stomach. As per the second GI, he said, his treatment plan will remain irrespective of it being UC or Crohn's.

2. Yes, Biopsies were done. It said "the appearances are most in keeping with IBD, such as Crohn's disease. Infection can not be entirely excluded. Clinical and endoscopic correlation is recommended."

3. I am currently not taking any medicine. My GI had advised Pentasa Enema, and if needed proton pump inhibitor, but agreed to continue monitoring me, if I don't take it. I was due to meet him sometime now, but I am unable to, as I plan to continue to be India for some more time. I had last visited my GI on 21st Oct 2013.

I am continuing this in the next post....

 

[mayU&Iheal]

All the above was 3-4 months back. I am in India since November 2013. After coming here I was looking for alternative therapies. In December somebody recommended a homeopath with good credentials. I am now taking homeopathic treatment from him. In addition I take turmeric and Vitamin D (3000 IU) most days. Also I take walks, do some yoga and pranayama. I eat most things except milk/ milk products and peanuts.

10-15 days after starting homeapathy treatment, I had a mild flare (some mucous and blood twice a day, for 3-4 days. That was in mid Dec. But since after that I don't have any symptom.

I had a Fecal Calprotectin done in Oct 2013. It was 149. Since I am not seeing any GI here, I got a FC test done 2 days back (GI's referral is not always required here). I got the result back today. It is now 62. I am very happy about it.

I think having almost no symptoms and a lower FC value is a good sign. I am not sure if it is because of Homeopathy or spontaneous. I plan to continue seeing the Homeopath for some more time and continue to monitor FC level. I will again see my GI, once I go back to Australia.

 

[Vir Koul]

Hi there!
I'm glad you are feeling better. Didn't have any feedback so was wondering about the latest status. Do share. I'm the guy who gave you the homeopath's reference.
Incidentally I'm virtually cured. I can even tolerate milk and coffee now without any adverse impact. I couldn't tolerate these earlier. It's a miracle after suffering with severity of Crohn's for over 5 years. Best wishes