The “R” Word

According to Ali G it is Respek.  According to another IBD blogger, Mary Claire, it would be Resiliency.  For me it is bigger then both of those words put together.  This week, I heard the “R” word officially for the first time since getting Crohn’s Disease…Remission.  My colonoscopy was back in February and I knew I was healed more than the previous year.  Sadly the pictures didn’t save so I couldn’t actually see the results.  This week was my first appointment with my GI since then.  After a little chit-chat and a quick exam, he went on his computer, pulled up the scope results, and mentioned how there was no Crohn’s activity and that I was in remission.Happy

Needless to say I was a little shocked.  I knew I was doing well.  I don’t show many symptoms these days.  I didn’t know I was completely in remission though.  I was so happy.  But like all things, the moment has now passed.  Of course, I am still happy, but just because the Crohn’s is in remission, doesn’t mean I still don’t get symptoms.  Because this is such a nasty disease, even if my intestines are healed, I can still show signs of the damn disease.

The first sign is my joint pains.  Both my knees and my knuckles get bad arthritic pain at times.  Then there are the mouth sores that come on at any given time.  Next are the skin problems like rashes and pimples.  The list can go on and on.

But what does remission me.  Well, it actually means a lot to me.  For the first time in a long time, my medicine is working.  After years of throwing poisonous medicine into my body without any results, I switched over to a non-conventional drug.  2 years after starting the med, I am in remission.  I would say it is working perfectly and scientist really need to start studying the role Naltrexone can play in IBD.  Another great thing in all this is that my doctor is also convinced that LDN works and might start giving it to other patients.  I was his first and his guinea pig.  I would say the test has been successful.

Another thing this means to me is that diet does in fact play a role in IBD.  For years I ate what I wanted and never healed up.  Along with the change in meds, I also went gluten-free.  It has been a bumpy road in my gluten-free journey and I really have to fight some cravings every now and then.   But ultimately it really has helped in my healing process.

Now, please just know, I am not saying that if everyone took LDN and went GF that they would achieve remission.  Everyone is different.  What works for one person not might work for someone else.  My results may not be typical.  I don’t know since there are no studies showing a correlation.  So please, don’t stop your current therapies to try mine just because I got results.  Whatever you are doing might give you the results you need.  If you are not there yet, be patient.

So for now I will sit back and enjoy what this word means to me because I know like so many others know…that this feeling can go away at any minute.

11 comments on “The “R” Word

  1. jcrohnie715 says:

    Congrats on Remission!! what exactly is LDN? I don’t think I have heard of that before?

  2. suedi52 says:

    That’s great. My son has just been diagnosed with Crohns at 23. He’s on prednisone and the docs want to put him on Remicaid immediately. We are concerned about the side effects. I’ve researched LDN and the clinical studies don’t show good results. Why did you decide to go on it? Do you know others who have done well with it?

    • I talked to people online and most had good things to say about LDN. I didnt have many choices left for meds.

      • suedi52 says:

        Guy, to achieve remission on LDN is wonderful. I pray you’ll continue to achieve such great results on it. The other choices are either ineffective or so invasive to the health of the body. Who wants to suppress their immune system? The Vicious Cycle (SCD) diet is supposed to aid you immune system to fight the bacteria that has overtaken the health of your digestive tract. My son has been on it for one week. We hope it works…but if he’s put on Remicaid, which suppresses the immune system, the SCD diet might not have a chance to work. We are torn on what to do. Thanks so much for the reply….

      • I know what you mean about the other meds. Many of them are scary, especially with some having a side effect of uncurable cancer. I myself have been on some of those meds. Looking back, I wish I knew of LDN years ago.

        Also, good luck with SCD. I found this diet to be way to restrictive and I knew I would never survive on it. I hope it helps your son. So many people swear by this diet.

  3. Kurt says:

    I just started LDN. 4 days ago. So far no sleep issues. I did SCD for one year lost a ton of weight but after a year on it I felt great for a year and a half afterwards. That was 2 yeas ago. Past two months have been increasingly problematic. I don’t have crohns as seriously as others but I know diet it a major factor in living with crohns.

  4. Kurt says:

    Can you update me with how you are doing with LDN, are you still taking it?

    • I am still on it. Not sure how well it has helped me. I went off the gluten free diet for awhile and got sick again. Went back on and felt better. Now, for over a month I have been in a bad flare. Overall my health has improved since being on LDN but I don’t know how much the med has had in impacting my Crohn’s.

  5. Sue says:

    An update on my son. He’s been on the SCD diet for one year. It helped almost immediately with certain Crohn’s issues…pain, bloating, gas, etc but it has not put him in remission as we had hoped. His doctor, of course, doesn’t believe any diet will help, said the only alternative was Remicade or Humira. We chose Humira, but my son developed an abscess and fistula and has been dealing with that for eight months. It’s not healing, unfortunately. Recently put on Humira weekly and hoping that will aid in healing. It’s a Long Road with Crohn’s.

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