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32 year old looking for help!

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Crohn's Disease
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Posted 12/12/2010 1:37 AM (GMT 0)
Hi,

I've been reading through the helpful forums here and decided to finally join. I'm 32/f, was diagnosed with UC 6 years ago, and a few months later the Dr. changed the diagnosis to Crohns.

I was on Remicade for over a year, which helped, then a blood test showed that I was allergic to it.

I've been on Asacol, Prednisone, and Flagyl many times.

Currently, no meds, but not feeling well. Lots of diarrhea, stomach cramps, and a leaky, inflamed anal fistula (which sometimes becomes an abscess).

I was on the SCD diet for about 6 months, and it helped a little, but then became too challenging for me to maintain. I'm considering going back to it, although it sucks all the joy out of life, as all good-tasting foods are illegal! I'd love to hear stories from people who did the SCD diet for 2 years and then were able to go to regular foods.

Also, I'm so tired! I run my own business, have 3 kids, so I need more energy, and I'm not sure what to do...

I saw a Dr. recently who did energy testing and gave me supplements and told me to go off wheat and dairy; at my next visit he will test more foods and probably advise me to go off more foods...
Posted 12/12/2010 5:36 AM (GMT 0)
Welcome to the forum, I'm glad you found it.  I've learned a lot here and everyone is very helpful.

So why are you not on any meds?  Remicade is not the only option.  If you're not feeling well, you should be looking at more than just dietary mods.  Sorry to be the bearer of bad news, but this illness does not go away.

 

Posted 12/12/2010 5:52 AM (GMT 0)
Gosh, I got nothing for you other than I am trying to avoid that diet if at all possible.  I know I don't yet have it in me (nor does my wife) to get that strict with eating.  I have way too many foods that I can eat that are not allowed by that diet. 

The only thought I have to offer is that I take Vit c, 1000mg a day.  I have no proof but it always seemed to help with

Posted 12/12/2010 7:17 AM (GMT 0)
{{{hugs}}} I imagine just getting through each day is a MAJOR achievement for you at the moment! I am pleased to hear you have a good Dr who is looking are your food intake - I have had a huge improvment in symptoms since I started following a FODMAP diet about four months ago plus Vit B injections and Vit D have helped my energy levels. If your are interested in diet you might find this article interesting  http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-BarrettPractGastro.pdf   All the best :) Lesley
Posted 12/12/2010 1:48 PM (GMT 0)
First I'm sorry you are having such a rough go of it at the moment, but I am glad you found us. I'm sure you will find lots of help and support.

I am missing in your post why you aren't on some sort of medication? You can't take Remicade, but what about any other meds? Are you against taking meds and want to go a natural route?

Personally I went 10 years untreated. I knew I had CD because my mother had it, but the doctor thought I was crazy. So I treated myself by diet alone. I was relatively good, until one day I wasn't. It was a very rude awakening and it was almost over night that I went from a young carefree mother, to someone who was in excruciating pain and couldn't eat anything. It took the next 10 years to undue the microscopic damage that had been done. Now I manage my diet AND take maintenance medication AND supplements. They work hand in hand to keep the CD at its lowest possible level. I have been able to stay out of the operating room for over 12 years. I will never go without maintenance medication again.
Posted 12/12/2010 4:57 PM (GMT 0)
I am another like Zanne who suffered greatly because I didn't want to take meds. I ended up with an emergency resection, another only 3 years later and years to get my Crohns back under control. Some with fistulas do have success with SCD, but I agree it is a bit restrictive. Since the emergency resection I followed a low residue diet all the time. I am now finally back into a good remission and able to eat alot more foods that I couldn't before. I just had a caesar salad this week, first one in YEARS!! And no issues. I have been eating baby carrots, apple's (no peels) without issues. I still follow the low residue diet to a degree, its just now modified to allow a few other things back into my diet.

Oh and re your energy levels, have you have your iron stores (Ferritin), or B12 tested? You might want to see if your anemic or B12 is low. I also take Vitamin D3 also.

You might want to google the low residue diet and see if that is something that might help you to eat some. This diet is usually recommend for folks who are flaring. But I continued it for a few years as it was what agreed with my system the best. Hope that helps some. Hugs!
Posted 12/12/2010 4:59 PM (GMT 0)
I would not let the SCD scare you. It is tough to be 100% compliant at first, but I have been 99% compliant for the last 6 or more months and I think 100% starting this month.

The food tastes great and it transforms food into medicine. I have incorporated Nourashing traditions (stocks and fermented foods) and Living without bread (low carb) also. My doc says I am in the top 10% considering where I was one year ago.

The biggest thing for me is make a bunch of what ever I am making and freeze it into portion packs.

I do not see myself stopping this.

Any how, another opinion for your consideration

Take care

David

 

Posted 12/12/2010 5:51 PM (GMT 0)
I again have to wonder about meds as well. Others use a low residue diet, and I foun there are just safe foods for me.
Posted 12/13/2010 3:13 AM (GMT 0)
Thanks, everyone. I'm so glad that I found you!!

Most of the time my doctor gives me prednisone, which helps for a few weeks. Then, I taper off, and a few weeks later feel badly again.

I've been on Cymzia which did not help much.

My doctor did say that I can try Humira, maybe I will give it a shot.

I'm ok- if you saw me in the grocery, you would not know that there is a thing wrong with me!! However, I run my own business (I own several websites, work from home) and have 3 kids, so I'm feeling weak and tired lately.... I'd probably be tired anyway without the Crohn's with my schedule, but I know that I'm feeling worse than I ought to be...

And the diarrhea has never stopped since I was diagnosed, I don't think I've ever had a solid movement in the past 5 years.

I'm googling the low residue diet now.

I'm taking a few supplements- slippery elm and fish oil.
Posted 12/13/2010 3:22 AM (GMT 0)
Have you tried oral meds? I have failed most of the anti-TNF, but injectible MTX worked best for me (and it is a fairly old cheap drug).  And this seems to be the theme of the day have you had your vitamin levels checked recently such as b-12, iron, vit d, etc.?
Posted 12/13/2010 3:41 AM (GMT 0)
I agree that having your vitamin levels checked would be a good idea. But also want to point out that I am one who doesn't qualify for the "big gun" drugs. I have been on 6MP for the last 12+ years, along with some other meds thrown in to the mix, but not the biologics, because my disease has been well controlled. If you saw me out and about you would not know that anything was wrong with me either. In fact my my last doctor used to say he had to keep reminding himself how sick I really am because I never look it during flares. Just letting you know that there are a host of options out there. Diet is a part of the picture, but maybe not the whole thing.
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