Need help in Canada

[Jarbara]

I'm so lost these days. I've been on the SCD diet for 5 months and my relapse started after month 4. I attributed it to work stress, and possibly being cocky with my Imuran. Now I'm off on medical leave, on imuran and entocort, and starting humira tomorrow. My GI said this is the last thing I can try, then I have to have my colon removed. I want to do a more natural approach if I can, and prevent needing surgery! I feel like it's a lame excuse and giving up too easily to just remove it without trying harder.

I feel really discouraged and sad...and alone. I just don't know what to do anymore. I've tried finding a different job with no success yet, I'll need to go back to my old job because I need the medical benefits...but they're probably going to be able to modify my tasks. I've been exercising and doing yoga more often. I've been getting counselling. I even tried going to church and praying...which is not normal for me.

I know it's probably typical to blame yourself for this, and I find it hard not to. I feel like it's because of my personality that I have this disease. I channel my emotions to my gut, and keep things inside. I hold myself accountable for everything and am hard on myself. I just don't know how to come to terms with who I am and how to manage this disease with my personality.

I have been following SCD but am doing some things wrong. I almost think I'm torturing myself with food on purpose, by eating too many bananas, peanut butter, honey...things I know mess me up but it's like half of me doesn't care. I'm just finding it really tough. I have no support group and am learning about the diet completely by myself. I don't have a holistic practioner, and my GI or MD are both just silently supporting me with no real input. My family, friend and partner are just observing and are supportive but have no real input. I feel alone.

Is there a holistic practitioner or GI specialist who would support preventative treatment in the Toronto area or east? Is there anyone who could further guide me on my diet or holistic treatment?

 

[hawkeye]

Were you skipping doses of the Imuran? Not sure about GI specialists in the Atlantic Canada who are more holistic based - Halifax may be your best bet regionally before trying Toronto. I'd talk to your GI about diet and Imuran / Humira first.

 

[David]

Hi there and welcome to the community. Do you have Crohn's disease or Ulcerative Colitis? If it is Crohn's disease, then I strongly suggest you look into the clinical trial linked in my signature. I think it would be right up your alley.

All my best to you.

 

[vonfunk]

Personal opinion regarding holistic medicine aside.
Toronto will have holistic practitioners that have a grip on IBD that's just based upon population, as far as GIs go there are supportive ones in regards to using diet as an aspect to control it, however it really does depend on if it CD or UC (but based on you being in Canada,and are starting humira, I'm guessing CD). If it is CD you'll have a better chance of delaying surgery due to dietary changes but for the most part it is due to how the inflammation is not limited to the colon. If it is UC then the general consensus is the diet does little to affect the progression of the disease because the colon has no major function beyond removing water from waste product, if that is the case surgery will probably be recommended.

With that said, Halifax is a better starting off point. Halifax tends to has larger percentage of the population consisting of people leaning towards eastern religions, yoga, new age beliefs, etc.. This might make it easier to find a more sympathetic doctor compared to Toronto.

 

[hawkeye]

Just thought of this - One contact may be a compounding pharmacist I know of one in Moncton who is not just purely pharmacutical but has a holistic component as well. PM me if you need the contact info.

 

[maile]

Have you tried an all liquid amino acid diet like Elecare. My daughter tried it when she was first diagnosed with Crohns. I think it really helped her. She didn't have fever at all during that time. She did this for 3 weeks. I think the SCD diet tries to emulate the all liquid amino acid protein diet by having everything digested or absorbed in the small intestine before going to the large intestine. The reason why my daughter stopped is because she couldn't stand the smell or the taste to it. You have to be determined.I tried placing saran wrap on the top of the cup and inserting a straw. I think that helped. You might go into remission during this time, then you can try to introduce different foods a little at a time.

 

[Kev]

Couple of thoughts... off the top of my head. First, my understanding of the SCD process is that you HAVE to follow it faithfully for at least 2 years in order for it to work. The idea (my totally layman's understanding of it is) is to starve the bad gut bacteria. I think if you don't follow the diet strictly to the letter... the bad guys inside you rebound.

Next thought (keep in mind that two per day is pretty much my limit)... you are on Imuran and entocort, but are moving on to Humira... your last resort before losing your colon (so, you either have Crohns colitis, Ulcerative colitis, or both). My 'guess' is that obviously the Imuran and entocort aren't working (else why risk Humira). If the humira doesn't work (although it has a good track record) your GI 'says' you don't have other options (apparently you GI is either unaware of or doesn't believe in treating with LDN).
I'm not knocking holistic treatment... haven't needed it. I use LDN. I have used it for over 7 years. One little pill at bedtime... virtually no side effects worth losing sleep over.
There are 3 pharmacies here in Halifax that compound it.. currently I pay about 75 cents a pill. So, you can look west, towards Toronto... or take an afternoon drive to Halifax.
Your call.... your colon. If you have Crohns colitis, and they remove your colon, it will probably come back as Crohns disease. I had a couple of feet of colon removed, but I stopped there... because I had both Crohns and Ulcerative colitis... so surgery just was not a good option. Every time they cut my disease out, it came back, worse than ever.

 

[Jarbara]

Hi, thanks a lot. I was in a pretty bad mood when I wrote this, but I do need to stop blaming myself for every little thing I eat...I've been very strict with my diet, so am doing pretty good I think. You're right, thanks

First thing to say is it's not your fault!its a dumb disease that has struck it can and will get better.you need to speak to your doctors about how your feeling and it sounds like your meds need altered/changed.the holistic/natururist approach doesn't,t really seem to work it's only common sense that a varied healthy diet is good for us all including non crohnies it's hardly bad eating the odd piece of fruit,honey whatever you enjoy.i eat things in moderation which can set me off,salad being the main one but I love lettuce,tomatoes,coleslaw and cucumber which does set me off.don,t beat yourself up about having a banana or honey or anything else for that matter.good luck all the bast

 

[Jarbara]

Hello! I think I missed the odd dose of Imuran over the winter. I was on this "SCD is the solution" kick, and I missed a few doses thinking I didn't need it. Probably wasn't a great idea since I'm flaring now. I heard of another friend who did the same thing, and he started flaring again as well. Right now I'm getting on Humira and staying on Imuran. I'm hoping that this will work, and my bowel will heal. I'd love to be off drugs, but am not even going to entertain it until I'm healed up.

I will check out Halifax to see if I can start with some Holistic care in conjunction with my drug treatment. Thanks

Were you skipping doses of the Imuran? Not sure about GI specialists in the Atlantic Canada who are more holistic based - Halifax may be your best bet regionally before trying Toronto. I'd talk to your GI about diet and Imuran / Humira first.

 

[Jarbara]

Thanks I'll check into it. They think I 'probably' have UC, but they're still a bit unsure if it's Crohn's or UC. So I'll check it out! Thanks.

Hi there and welcome to the community. Do you have Crohn's disease or Ulcerative Colitis? If it is Crohn's disease, then I strongly suggest you look into the clinical trial linked in my signature. I think it would be right up your alley.

All my best to you.

 

[Jarbara]

Thanks, good ideas. Halifax is closer, which is nice. Our GIs in PEI are pretty good and I feel well taken care of. The only thing is I don't hear a lot of other IBD patients who are trying to manage their diet and stress, and it seems drugs are the main treatment (from anyone I've met). Since I have indeterminate colitis (and since I'd like to be healthy anyway), eating well for me is a baseline approach. I don't know if it will help in the long run or not with my colon. I hope it does, but you could be right!

Personal opinion regarding holistic medicine aside.
Toronto will have holistic practitioners that have a grip on IBD that's just based upon population, as far as GIs go there are supportive ones in regards to using diet as an aspect to control it, however it really does depend on if it CD or UC (but based on you being in Canada,and are starting humira, I'm guessing CD). If it is CD you'll have a better chance of delaying surgery due to dietary changes but for the most part it is due to how the inflammation is not limited to the colon. If it is UC then the general consensus is the diet does little to affect the progression of the disease because the colon has no major function beyond removing water from waste product, if that is the case surgery will probably be recommended.

With that said, Halifax is a better starting off point. Halifax tends to has larger percentage of the population consisting of people leaning towards eastern religions, yoga, new age beliefs, etc.. This might make it easier to find a more sympathetic doctor compared to Toronto.

 

[Jarbara]

Is this similar to the composition of TPN? I never tried the liquid amino acid diet. If my flare continues to worsen, I may go down that route because I really don't want to get on prednisone again. Thanks!

Have you tried an all liquid amino acid diet like Elecare. My daughter tried it when she was first diagnosed with Crohns. I think it really helped her. She didn't have fever at all during that time. She did this for 3 weeks. I think the SCD diet tries to emulate the all liquid amino acid protein diet by having everything digested or absorbed in the small intestine before going to the large intestine. The reason why my daughter stopped is because she couldn't stand the smell or the taste to it. You have to be determined.I tried placing saran wrap on the top of the cup and inserting a straw. I think that helped. You might go into remission during this time, then you can try to introduce different foods a little at a time.

 

[maile]

It's called enteral nutrition. I found a link which compares both enteral and parenteral nutrition.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3589130/

 

[maile]

Actually, it's not feeding with a tube it's drinking the nutrition by mouth.

Beat Crohn's! Getting to remission with Enteral Nutrition by Margaret Oppenheimer

 

[maile]

Also, it can get expensive but you can try Amazon

 

[Jarbara]

Cool thanks. Sounds like a reasonable way to get into remission. No cooking, haha.

Also, it can get expensive but you can try Amazon

 

[Trevor]

Jealous that you live in PEI! I was there for 10 days a few years back in the summer and speaking as someone who lives in a gorgeous part of the world you may have us beat...

I'd just pipe up and say that SCD isn't for everyone. I don't do well on it (Imurran wasn't any good for me either so don't blame yourself too much there either) as it is written out.

Maybe take a look at Chris Kresser and his diet recommendations? It's a little more flexible and personalized. Basically starts with a Paleo auto-immune protocol and works backwards from there, slowly adding things.