January 1, 2009 marks four full years on the SCD. March of 2009 marks eighteen months since the last time I felt a Crohn’s symptom. I considered myself to be in remission because I am on no medications, had no symptoms and my SED rate was a fantastic two.
Knowing how good I felt, I was very curious to see how good I looked inside so I recently had a colonoscopy. And now I find myself faced with a conundrum. The colonoscopy showed superficial ulceration and the biopsy came back as active Crohn’s. Furthermore, my doctor was surprised that I don’t have any obstructive symptoms given that four inches of my ileum is constricted by about half. He felt that given that I eat a lot of roughage I would be feeling pain, bloating and gas which I am not. This constriction existed before I began the SCD, so I wasn’t surprised that it was still there.
Allow me to backtrack a little. When I started the SCD, I had planned to stick to the diet, wait a year after my last symptom, then get some objective medical proof that the diet was working. This is why I elected to get the colonoscopy. My hope was that the GI would be amazed at how good my bowel looked and report that the biopsy was negative. I further hoped that he would then become enthusiastic about the diet, tell all his patients about it and I would have the satisfaction of helping others like me. I was so wrapped up in this hope that I caused myself a lot of stress.
From the time I scheduled the ‘scope to the time that I followed up with the GI afterwards, I was on edge. I didn’t sleep well, I got cold sores and finally shingles. In part, my stress was because I had put such a high standard of success on the outcome of the colonoscopy. The other aspect of my stress had to do with medicine. In my first consult with the GI he recommended that I take Imuran. I know lots of people find great relief in Imuran, but all the immunosuppressants scare the hell out of me. I knew that I would face a confrontation with my GI over this. After the ‘scope he again advised Imuran. I again declined. When he realized I wouldn’t budge, he suggested Pentasa. Again I said “no thanks”. I tried that drug in the early 90s and it made me sicker than a dog. It was worse than the disease.
I was hoping to create in this GI an advocate for the diet, someone with great reach and ability to impact many lives. In this aspect I feel that I’ve failed. This is a great disappointment for me and I’ve had to reexamine my goals.
If you’ve been helped by the SCD perhaps you’ve felt the same. Maybe it has changed your life and you want to shout it from the rooftops. You want to save others from the suffering you’ve endured.
Maybe you remember what hell it was when you were 17, you weighed 85 pounds and all they offered you was surgery and not much hope. Maybe you too are bitter that you suffered so long before stumbling upon the SCD, that it existed for more than thirty years before you first needed surgery. Maybe you are angry that you weren’t told about it sooner, but at the same time overjoyed to be feeling so much better.
But I digress. Let’s get back to my conundrum.
On the one hand I feel great and feel no need to take any drugs for my Crohn’s. On the other hand I have an objective lab result that says I still have active Crohn’s. My immediate reaction was to remain on the SCD, drug free. The specter of eventual surgery looms, but to me the risks of drugs appear darker. Given the weight of the situation I felt I needed to think it out long hand. I created a chart with four columns; treatment, benefit, side effects and risks. In the first column I included possible actions including doing nothing, eating SCD and each individual Crohn’s medication. I then filled in each row. Having all that information on one chart made my course clear.
Every good conundrum has a solution and for me, that answer is simple – eating SCD. I may not have gotten a clean bill of health from the lab, but my quality of life is fantastic. I have energy that lasts a whole day. I even wake up before my alarm. I can take long walks in the woods without having to leave a little something behind a tree. I live without fear. I don’t care where the bathrooms are because I don’t have emergencies anymore.
And oh yeah, my blood work rocks.
Eating SCD 
Sorry to hear the colonoscopy didn’t give you the clean bill of health you were looking for.
I am on SCD for RA, and many of the drugs used for RA are also used for Crohn’s. I did go on Imuran and I lasted about five days. It made me so sick I could barely function. I thought I had the flu. I was so tired I couldn’t even think. When I accidentally missed a dose and then felt better, I realized what was going on. And then my doctor tried to get me to go back on it! I said no.
I have been on other autoimmune medications but I hate Imuran. 🙂
I still wonder about a lot of foods that I eat. I think I still have mild reactions to some of them, and I know I eat too many nuts. And let’s face it, even though I’m greatly improved, my RA is still active. I wonder if I should get allergy tested again.
But I’m so much better than I was, I’m also going to stick with SCD. And my son is doing great on it!
Have you tried sulfasalazine? You’d have to get it compounded, but I like it because it has antibacterial properties. I did pretty well on it but I couldn’t tolerate the highest dosage — it made me feel sick. My docs are trying antibiotic therapy with me. I wonder if anyone is trying it for Crohn’s.
I hope you continue to get better. 🙂
Susan
Hey Susan,
Thanks for the input.
I tried sulfasalazine back in the 80s as it was the only medication available for an IBD. It was a desperate attempt to keep me off the surgeon’s table as it actually for ulcerative colitis, not Crohn’s. The drug doesn’t release until it hits the colon. The good side is that in the two weeks I was on it, I only had a mild headache.
Glad to hear you are doing well.
-Paul
Hi Paul,
Very sorry to hear about your colonoscopy results. I completely understand your desire to convince the GI of the SCD merits and the hope of creating an advocate for the diet. I feel the same way (though I am still on the first year of the diet and slow improvements). I think part of this desire is to provide others in your shoes with hope after what can be a very hopeless diagnosis.
Are you confident in the diagnosis and interpretation of the results? Is there any chance that you are still on a slow recovery. Surely the results of this colonoscopy are better than others you’ve had. Perhaps given more time on this path you will achieve complete healing?
Regardless, thanks for sharing this with us. My thoughts are with you.
Ryan
Ryan,
You’ve hit the nail on the head – I wanted to offer hope. I think I still can, but not in the same way I was hoping for. At the very least I still have a quality of life that is as normal as any person without IBD and that is a big deal.
I’m assuming that the lab report is accurate and the visual of my ileum did show superficial ulcerations so given all the available data, it seems likely that I still have Crohn’s. What I don’t know at this time is how my colonoscopy pictures before I went on the SCD compare to my recent ones. That is my next project.
Perhaps given more time on this path you will achieve complete healing?
Perhaps with time I will achieve complete healing. I don’t know if I’ll ever find out though because I’m going to have to be extremely compelled to endure another colonoscopy. That is, I’m going to have to have some sort of immediate medical need to do it again. My curiosity is satisfied and now I’m just going to be happy. I think it will be good for me.
Thanks Ryan I appreciate your support. I hope you are continuing to improve and feeling well.
-Paul
As a mom, I am so busy with kids, work, school now temporarily, sports, husband, and oh yeah, cooking! My son (15 now) has followed SCD for 1 1/2 years (and not purely over the last year), and I’m still always wondering what is going on if he has a slight stomach ache, a fever, or any kind of Crohn’s symptom. But he is so much better without drugs, that I would rather adjust his diet or remove foods that resort to drugs again. I understand where you are coming from, and I truly feel your bittersweet taste of success. But how wonderful that at least you know that food is at least a large part of the solution!
Best wishes,
Erica
Erica,
Thank you for your support. I applaud your bravery in the course you and your son chose. I imagine that you encountered your share of doubters and people wondering if maybe you weren’t doing the right thing for your child. You blog is fantastic and it must be so gratifying to have your son feeling well.
You are certainly right – it is wonderful to feel that I have some control of my future with diet versus being a patient along for the pharmaceuticals ride.
I’m also glad you commented as now I’ve found your blog and put it into my reader. I enjoy your voice and the photography is great. I’m going to have to comb through your recipes too – they look good.
-Paul
IBD is a very complicated thing … bacteria is involved that reacts to dietary changes like SCD, but the disease is there and tough to beat!
Paul I JUST started SCD a week ago for UC. I had started azasulfadine (sp?) and mesalamine, which stopped the bleeding, but having terrible diarrhea and waking up sick with diarrhea early every morning. I was following a diet recommended in a book called Vital Man, which claims that mucilaginous foods help, and recommended malted barley and slippery elm bark. When I got onto SCD, my dairrhea cleared up within 12 hours and hasn’t come back. I am overjoyed. Interestingly, my GI is the one who told me about pecanbread.com. So there are Drs out there who are open… Although he hadn’t heard about the pig whipworm therapies. Thanks for your blog- I plan to use your recipes! I thought restricted diets make you feel deprived but so far I feel the experience of eating is of much higher quality than when I ate di and poly sugars. I truly enjoy it.
-Atieno
Atieno,
I’m delighted to hear that you’ve found help with the SCD.
I’m the only one in my household eating SCD, and I think I eat the best. I long for the convenience of prepared foods, but I’m proud to say that I haven’t eaten anything from a box for 4+ years.
Take care and hang in there.
-Paul
If four inches of your ileum are narrowed, it may very well be scar tissue causing this, which means it won’t go back to normal size. If your labs and symptoms are great, I’d say you’re far from “active crohns”. I’ve had crohns for about 19 years now, and SCD is the only thing that’s helped me be symptom free. My doctor will never understand this. He thinks I’m only avoiding what’s causing the trouble, so I’m not curing it. But his meds are only addressing symptoms, and are in no way curing it, either. His meds may help some, but also can hurt, and you can’t say that about SCD. Celebrate your health and forget about doctors who don’t want to promote a diet that brings them no income.
🙂
Erin
Erin,
I’m sure that the narrowing of my ileum is scar tissue as aside from the SCD for the last 4+ years, I’ve taken no treatments for my Crohn’s.
Regarding the term “remission”, I think it’s a matter of semantics. The lab sees the biopsy and says “active crohn’s”. I see my lack of symptoms as some form of remission, but in the interest of full disclosure, have adjusted my labels. I’ve heard of people who’ve been put into remission from their Crohn’s with drugs – but I never thought to ask what “remission” meant for them. Are those people clinically, biopsy-tested-straight-from-the-lab’s-mouth devoid of active Crohn’s or are they in the same asymptomatic boat as I am?
You’re right about celebrating my new health. Nothing has changed for me. I still feel the SCD has given me a tremendously better life and future. I’m not going to see another GI unless I find myself in definite need of medical attention. At this point a checkup is wasted time and money not to mention needless stress. I am happy and moving forward.
Thanks for the encouragement,
-Paul
Hi. Thanks for posting this because I did just go thru a similar situation. I have been on the SCD for a year and I was hoping for good colonoscopy results, but my ulcers have actually gotten worse 😦 But like you I feel great so I also told my GI that I do not want to be on meds.
Anyway I found a doctor that treats diseases with nutrition. I really liked what he told me and I am following his advice. I feel even better than I did when I was on the standard SCD. The doctor said if I follow his plan I should be “all fixed up” by my next colonoscopy which will be in 6 months. I have my fingers crossed.
His name is Dr. Fuhrman, website- drfuhrman.com, my diet is basically SCD with WAY more veggies- juiced, blended, stewed, pureed. . I did cut out honey, butter, cheese, olive oil and most meat/ fish. I got his two EAT FOR HEALTH books, and his free IBD newsletter. He does advise eating oats, but I have not done that I am just eating a little homemade yogurt in the morning with alot of bananas, a couple walnuts, and dates (for sweetness). I just wanted to share this info. I am hoping this new eating plan will help me.
Again thanks for sharing your experience. I am glad to know that I am not the only one feeling good while still having active crohn’s.
Alaina,
I’m sorry to hear that your ulcers have gotten worse. It’s surreal to feel great and then have a doctor tell you that it’s not so great.
I would love to hear a follow up from you in six months to see how Fuhrman’s advice has worked out for you.
Thank you for the additional info.
-Paul
Paul, I love this site and all your blogs are so helpful. Because of this I am now checking my yogurt temperature.
Your experience is exactly why something like the SCD diet is so difficult to prove in a scientific experiment. Everyone is different. You can not go back in time and show the results of YOUR body if you had not done SCD, taking meds vs not taking meds. Most doctors could not conduct such a study because they can not with hold medication, nor can they monitor someone’s diet at home. Look at how many people have difficulty losing weight on a diet- it’s hard to control!
You are your own “proof”, your own success story. You feel good, and you are paving the way for others to make their own choices. SCD is not all or none. Some people choose to do it and also take medication. Others, like you, don’t take medicine. I salute you for making your story available to the public, and assure you that this information is appreciated.
PJ
PJ,
Thanks for the encouragement. I appreciate the support and I’m glad you’ve found something useful on my blog.
-Paul