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Defeated.

post #1 of 22
3/11/10 at 6:10pm
Thread Starter 
After trying for months different diets and supplements, I caved and went to my GI specialist. He felt my belly and was very concerned about the inflammation he felt. I also may have rectal infection. He was so concerned he booked me for a colonoscopy tomorrow. I am so scared. He wants to treat my crohns agressively with steriods and immunosupressants like immuran or possibly remicade. I dont want to take remicade. I have taken immuran and prednisone before and I would rather dance with the devil I know than the devil I dont. I feel so defeated and tired. Like all my effort was for nothing. I hate drugs. I hate them.

Is it possible to wean myself off them after the inflammation is cooled off and then help heal myself. If I didnt have a daughter to think of I would keep trying the natural route, but there is nobody to watch her if I get hospitalized for a flare. Even docs like Dr Mercola says that sometimes medication is necessary right. Am I doing something I will regret? I dont even know. I dont know what the right answer is. I am sick, tired and desparate. I cant stop crying, I feel so defeated and uncertain about EVERYTHING.
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post #2 of 22
3/11/10 at 6:19pm
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I'm so sorry you are feeling so badly. The natural route you have tried...has it been under the supervision of a qualified ND or has it just been you taking supplements on your own??

I understand that you do not want to take drugs. I believe there is a time and place for drugs, but I know several people who have cured themselves of various GI problems (including chrons) via natural methods. If I were in your shoes I would not take drugs but would continue to pursue natural solutions. Only you know what is best for you however.

Have you considered celiacs, other food allergies?

I hope you can find a solution, whatever that may be that brings you some relief mama!
post #3 of 22
3/11/10 at 6:41pm
I'm on the run right now and will try to post more soon, but I just finished reading this article and wanted to pass on the link in case you haven't read it yet.
Vitamin D Fights Crohn's Disease
post #4 of 22
3/11/10 at 7:19pm
Thread Starter 
I saw an ND. He was a homeopath. He did not really offer anything other than homeopathics. I did not notice anything while taking them. No improvement at all. I wanted an allergy test and he did not feel I needed one at this time. I have tried starving out candida, cutting wheat, dairy, meat, eggs at one time or another. Vitamin D, omega-3s, whole foods, bone broths etc. I am not giving up on natural methods, I just hope to get the best of both worlds maybe. Again, this disease has almost killed me a few times. I just want to do the right thing. I dont know what will help me at this point.

My last remission was achieved after prednisone and immuran. I weaned myself off and used natural methods to maintain it for about 4 years. I dont know why I flared. I think it may have been a course of antibiotics and NSAIDS after a tooth extraction about a year ago.
post #5 of 22
3/12/10 at 2:42am
I can't say do or do not take the drug but have you checked in the GAPS diet?
post #6 of 22
3/12/10 at 2:55am
You maintained remission for four years using natural methods? I think that is fantastic.

You will get through this bout and begin healing. And maybe next time you will be in remission for even longer.

It sounds like you know your body and were doing everything right. Your body just needs some extra help right now, probably due to the antibiotics as you mentioned, or maybe due to some contamination of foods.
post #7 of 22
3/12/10 at 10:26am
I've been working to heal my own digestive problems (not nearly as severe as crohns) and came across this woman who has a protocol that many seem to have success with - http://www.listen2yourgut.com/

It's based on an elemental diet for six weeks and then slowly adding foods back to identify what the triggers are. It looks expensive and very challenging but I *think* I would try it before hardcore meds. I can definitely imagine situations where I would jump at meds though. You will get through this again.

Wishing you peace and healing.
post #8 of 22
3/12/10 at 12:48pm
It looks like you haven't yet tried the SCD diet? It's famous for reversing Crohn's. Look at the reviews for the book on Amazon and you'll find some amazing testimonials. It's not expensive, just requires some discipline, and most folks are able to go back to a normal diet eventually. It has an approach that is slightly different than the no-dairy no-gluten thing, and explains why some folks who have tried no dairy and no gluten are still having symptoms. It's based on science about how the body digests simple sugars, including carbohydrates.

Here's the link to the Amazon page, with the reviews from folks who went into remission:
http://www.amazon.com/Breaking-Vicio.../dp/0969276818

Some folks, after SCD, got colonoscopies and their docs said they looked like they had never had any problems; the tissue was completely healthy and young-looking.
post #9 of 22
3/12/10 at 12:53pm
Thread Starter 
Thanks ladies. I go in for my scope in a few hours. I hope its not as bad as he thinks it is. Although the prep was the most painful prep in life. Its up there in my top 5 most painful experiences of my life. I have a feeling its bad.
post #10 of 22
3/12/10 at 2:26pm
Quote:
Originally Posted by Lydiah View Post
Thanks ladies. I go in for my scope in a few hours. I hope its not as bad as he thinks it is. Although the prep was the most painful prep in life. Its up there in my top 5 most painful experiences of my life. I have a feeling its bad.
For me, the prep was much worse than the actual test. Good luck!
post #11 of 22
3/12/10 at 5:57pm
Quote:
Originally Posted by Lydiah View Post
I think it may have been a course of antibiotics and NSAIDS after a tooth extraction about a year ago.
Yup.

I used a holistic dentist a few years ago that doesn't use antibx at all. Since recovering myself from gut problems, I will do everything possible in the future to avoid them unless for a life threatening illness.

He did an iodine rinse after removal and px'd olive leaf extract, anti-inflammatory enzymes (bromelain and papain) and alternating H2O2 and salt water rinses instead. I think I had a homeopathic for pain too but didn't need it.

I hope you feel better soon!
post #12 of 22
3/12/10 at 11:36pm
Thread Starter 
Well, the results were not too good. I had so much inflammation he had to use a pediatric scope to fit in there. I have a few fistulas and one is heading for my vagina. It totally explains that when I stopped consuming wheat/fiber that I felt better. Its hard to squeeze fiberous stool through an inflammed opening. He really wants me to do the remicade for awhile until the fistulas close up. I am a bit leary of it but a vaginal rectal fistula would be devestating to my married life. I still plan on healing my gut in natural ways too. I am in a really dangerous place right now with my disease.
post #13 of 22
3/13/10 at 5:18pm
I've taken Remicade for a few years now. PM me if you want more info.
post #14 of 22
3/13/10 at 7:26pm
Thread Starter 
I have made a decision and I am at peace with it. I must get myself out of danger. Remicade has been very sucessful for a lot of people. My husband and I feel its the best thing to get me out of danger. After the fistulas are healed I will use diet and natural methods to maintain remission. I still plan on using diet while I am using medication.
post #15 of 22
3/13/10 at 8:59pm
It's going to be ok, mama. You are listening to your body and helping it to heal.


Pat
post #16 of 22
3/13/10 at 11:39pm
Thread Starter 
Quote:
Originally Posted by WuWei View Post
It's going to be ok, mama. You are listening to your body and helping it to heal.


Pat
Thanks Pat, It means a lot to hear you say that. I really think it was the antibiotics and NSAIDS that triggered this relapse. Its something that I will never take again if I can help it.

If I risk a surgery right now I could lose my rectum and have a permanent colostomy. This is so scary.
post #17 of 22
3/14/10 at 4:12pm
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post #18 of 22
3/14/10 at 4:42pm


I hope things really get better.
post #19 of 22
3/15/10 at 10:35am
I do, too. I hope things get better soon for you.
post #20 of 22
3/15/10 at 6:21pm
I am so sorry you're going through this. It's hard to have to admit that the "natural" methods aren't working. But it feels so GOOD to feel WELL again. I fought a flare for a whole year, trying to stay off the 6-mp (like immuran) because I was worried about my nurslings, and finally I had to admit that it wasn't working. I was so sick and wasted that I couldn't walk from my front door to my back door without having to sit down twice, and it was so clearly time to give in and do the meds. (I have UC-- at the time I was on Asacol, and it wasn't helping. I first got sick after a round of broad-spectrum antibiotics I was given after my second c-section. But I also blame my crappy diet up to that point, especially the way I was fed as a child.)

So we did 6 weeks of pred, then eased onto the 6-mp, and I was well again. It was awesome. I put on twenty pounds and looked human again and had a ton of energy, and I was so glad I did it, even though I did have to wean the twins soon after because DD2 had a lowered white count for a few weeks in a row.

As it happens, I was able to get off the 6-mp a year later, and I've been maintaining remission for 9 months with nothing but the SCD, probiotics, and the Asacol. I can live with the mesalamine, KWIM? And even with that I've been able to reduce the dose.

Good luck! It sounds like you're happy with your decision, and are ready to move forward. I wish you the best.