SCD: 7 months of remission and things fall apart

[TwanXP]

Hello All,

New to the forum and wanted to share my story. I was diagnosed with CD in 2009 and developed an abscess shortly thereafter that I assumed was a hemorrhoid until 2012. After having a draining seton placed, my GI started pushing me towards Remicade or Humira. I did my research on these drugs and after seeing the terrible side effects, I was determined to find another way.

What I found was the SCD. I read the book, I prepared and committed to being on the diet starting in November 2012. I had immediate success. My bm's decreased to 1 per day and were typically solid. Everywhere I went, I sang the praises of SCD as a miracle for me. I went from a chubby 205 to a lean and muscular 165 and enjoyed 7 amazing months of remission. In early June, I decided to try acupuncture to add one more tool to my bag of tricks. That very night I had diarrhea for the first time since starting the diet. I thought I could make tweaks, go back to the intro diet and get things under control. Boy was I wrong. My symptoms got worse and worse and got to the point where they were worst than they had ever been, even before my diagnosis. After 3 weeks of pure hell, I contacted my GI who started me on Entocort. Two weeks passed, slight improvements, but far from normal. He started me on Prednisone. Sleepless nights, sweating, and the return of cramping accompanied slight improvement, but far from normal. It's been almost 2 months of the worst flare of my life and while I am still strictly eating SCD, I am running out of options. I dropped from 165 to 147 and continue to drop almost daily. With no carbs, starch or sugar, I find it very difficult to put weight on. My GI is once again pushing Remicade, saying that without it, I put myself at risk of needing surgery down the road. It's hard for me to just accept this since I fought an 8 month war to stick to SCD and NEVER cheat even once.

I've turned to some integrative doctors as a last resort. The first one told me flat out that "SCD, Gaps, and Paleo do not work because they allow too many carbs." This was obviously not what I wanted to hear. She is currently working up a diet for me that will further restrict an already restrictive diet. I honestly don't know if I can handle it. I am also trying to get an appointment with a Dr. in NY who has had success treating patients with various enzymes, infusions and things I don't understand.

Part of me wonders if it's just time to give up. To just cave in and start the Remicade. To face the possibility of developing lymphoma or one of the other awful side effects. The other part of me tells me to just keep fighting a little bit longer, to see if I can get back to remission. Bottom line, it looks like I'll never eat a grain or gluten again. It should be the least of my worries but to think I'll never enjoy a slice of pizza or burrito again is just devastating. I know that even with Remicade, sticking to a restrictive diet is what will promote the best for me in terms of health.

I don't really know what I am looking for in this post, just sharing my story I suppose and hoping to learn from all of your experiences as well. Hopefully all of you have had more success than me.

Currently taking:
Prednisone 30mg, 4.5mg LDN, vit. D, pro-biotics

 

[TwanXP]

BTW, no Dr. has any clue as to why the acupuncture would trigger a flare like this. Most have suggested it was just terrible timing. No one has ever heard of such a thing happening before

 

[scooby100]

hi TwanXP,
How were your inflammation markers during the remission period (CRP, ESR, calprotectin in the stool) and what are their levels now?

 

[helena101]

Hi TwanXP,
My doctor also was pushing remicade when I was diagnosed in 2011, because I also had a fistula.
I did Prof John Hunter's diet instead (he is a doctor in the UK) which is elemental diet (just a liquid formula with enough calories and nutrients to sustain you), followed by a step by step introduction of foods, introducing one new food every 4-7 days, and avoiding foods which seem to produce symptoms.
Let me say it didn't work 100% for me, in that I still need to take asacol to remain well. I tried to stop it twice and started having symptoms. But, I managed to avoid any of the stronger meds (so far) and have been completely well for two years, no symptoms of crohns, my blood tests and Calprotectin tests all normal.
Maybe its worth a try? In any case I really recommend his book on inflammatory bowel disease to anyone suffering from IBD, you can find it on amazon.

 

[UnXmas]

Hi. I'm sorry you're facing this given how much dedication you put into diet. I've been in that position too - I worked so hard at various different diets (each one claimed to heal and was supposed to reduce my symptoms), only to end up more sick than ever and unable to sustain a healthy weight.

For me, reaching a point where I just gave up on the idea of diet healing me - or healing in general - was a wonderful turning point. After years of feeling like I was a failure and putting myself on restrictive diets, I finally became able to accept that my disease was not within my control. It was not my fault if I didn't get better.

I have been so much healthier since I allowed myself to go back to eating "normally". I can join in eating socially, enjoy food for the taste, and not have to plan around shopping for and preparing food.

I do still take my diet into account - I avoid too much fibre as I found that makes my symptoms worse, and I try to eat high calorie food as I still find it difficult to keep my weight up. My diet is balanced, so although I do eat processed food, I'm not just consuming junk all the time.

Giving up on diet was, for me, very freeing.

However, it may be different for different people. I know some people find diet helps them a lot, with various illnesses. Some people really enjoy learning about alternative diets and feeling that they are improving their health through different ways of eating. For some people, joining in family meals or eating out is not that important to them socially.

Along with diet, I tried a lot of alternative medicine practises, with no success. Although I am very aware of the risks of different conventional medicines and surgeries and I certainly find some aspects of conventional medicine extremely problematic, I have found far more than I ever imagined from finding medications that work for me, and conventional medicine has saved my life.

I would just like you to know that you're not the only one who has been disappointed by diet. You sometimes come across people who believe that those of us who aren't helped by diet just haven't been strict enough, have no will power or that we give up on a diet purely because we can't bear the thought of never eating our favourite junk foods. This can be very frustrating when we've really tried but our illness is still just not something we can control. Please don't ever feel like you've failed if you do decide to try more medications or if you find you don't want to try particular diets any longer.

Sometimes people benefit from working on their diet and/or alternative medicine along with conventional drug therapy - it doesn't always have to be an either/or, as it seems you already know, and it might be that bringing in medications alongside keeping to a diet brings you more success. You can also change your mind at any time. Some medications can have permanent side effects, and diet can have long-lasting consequences, but you can also go back to a diet at any time, or try medications in the future even if you're not ready to try them now.

It can be very hard to know when to stop with diet, as there is always a new one to try, or another food that someone has told you is unhealthy. But for me I did reach a point where I decided diet just wasn't working and have been much happier for doing so. Actually, thinking about it, it wasn't really one point - it wasn't a sudden decision. I was finally coming to terms with being ill, and knowing that illness would be permanent, and gradually becoming ok with that. This allowed me to lose that constant worry that eating the wrong thing would make me sick - because I knew I was going to be sick anyway, and that it was not the end of the world. As I became more focussed on aspects of my life other than health, the health aspects of diet became less important. And I think it was actually the case that once I was eating freely again, with hindsight I saw how none of the diets I'd been on made sense and that diet did not have the power to heal me, rather than deciding that diet wasn't helping and then switching back to a normal diet.

But there are a lot people who have had success with SCD and similar diets on this forum, so whatever you decide to do you will find a lot of support here.

 

[UnXmas]

BTW, no Dr. has any clue as to why the acupuncture would trigger a flare like this. Most have suggested it was just terrible timing. No one has ever heard of such a thing happening before

Not that I know anything about acupuncture, but I would guess that it was more likely coincidence that your flare started after having it. I know that I used to see patterns and correlations in my symptoms that were never actually there. I think it's natural to think that way because we are thrown into a situation where our bodies are doing things that we just don't understand, and so we try and try to find explanations and make sense of what is happening. And sometimes we're correct, because there are many factors that can make an illness better or worse - some which we can control and some which we can't. But Crohn's flares can come on without any cause that we can see, so there may have been an invisible trigger which made yours flare, that just happened to coincide with when you had had acupuncture.

 

[hugh]

That very night I had diarrhea for the first time since starting the diet.

It would be foolish to discount the acupuncture,
You will never know but it cannot be discounted as the trigger.

If you need to go on meds to get it under control then it might be a good idea,
It's not time to give up on diet though, sounds like it was working well until the acupuncture?

Diet isn't a cure but it is a great tool for managing the disease

Unlike UnXmas, i found paleo (tried SCD and switched to paleo) to be liberating and i watch people killing themselves with the SAD (standard american diet) with a mixture of pity and incredulity

Guess we're all different

 

[Beach]

Oh, this is just something I ran across while reading Dr. Hunters's IBD diet treatment book this evening. It reminded me of your mention about metal acupuncture needles.

"...Nevertheless it is well recognized that a flare of IBD many follow stressful events. One young patient of mine had UC, which was so well controlled that she had stopped taking any treatment. One day while out shopping a piece of metal fell on her head from some scaffolding she passed by, causing a nasty cut. She was greatly shocked and distressed. Three days later her UC relapsed and took several months of treatment to bring it back under control. It was difficult not to believe that the stress had not led to this relapse. Many physicians have reported similar occurrences..."

When reading that I was thinking the patients flare could be coincidence, stress, or something else going on. It would be a long shot but sometimes mentions are made on the sight of hyper metal allergies, causing skin and digestion issues. One recent thread which looked at several other metals outside of nickel.

"Nickel and Crohn's disease"

http://www.crohnsforum.com/showthread.php?t=49731

 

[hugh]

wowBeach, that's 'out there'

There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.
- Hamlet (1.5.166-7), Hamlet to Horatio

 

[Beach]

Yeah, I was chuckling about that one. A bit like acupuncture, just on the less delicate side.

 

[lola99]

I know your worried about the side effects of humira or remicide and im in no one trying to persuade you to take either. But I started humira 1+ years ago and so far ive had no side effects at all. I feel like a totally normal person and have been pain free the whole time (except when i ate raw carrots ,whoops). I was on all kinda of pills before,entocort,Asacol,prednisone,azathioprine,etc. None of them worked. yes the list of side effects is scary but sometimes i wonder if they put all of that one there just so they aren't liable if something does happen.