SCD for 3 months, Just Had Blood

Just to start, my GI doctors have been back and forth between Crohns and Colitis...right now just calling it indeterminate colitis

Back in the spring I suddenly had a lot of blood for a few days. It went away but I got a colonoscopy anyway. They found inflammation in one area so I went on Uceris. Last time I went on Uceris was 12/2014 and I went from feeling the worst I've ever felt to feeling great. Well this time I just went from feeling not great to slightly better, not much of a change. It was making me weaker in the gym (I'm into bodybuilding) and since I still wasn't feeling that different I just stopped. With the sudden change, I did seem to start feeling worse and then I started the Specific Carb Diet (SCD) on 7/5/2016

I've been doing the SCD extremely strictly. Even eliminating fruits, dairy, peanut butter, and eggs. So my diet is very bland. In the last two months or so I added fruit for a bit, honey and dextrose at times, and then back to fruit, but the more I added the less formed my stool became a 5+ on this scale http://upload.wikimedia.org/wikipedia/commons/thumb/2/21/Bristol_stool_chart.svg/2000px-Bristol_stool_chart.svg.png

Last Thursday, 10/13/16, I switched out all of my fruit for peanut butter. I felt a bit better. Stool became slightly more formed. But then, after feeling fine, I just went to the bathroom and noticed some red in the formed stool. I wiped and there was bright red blood on the paper.

EDIT: I should note that while I feel about the same, with little to no cramping, I am off my Asacol HD and Rowasa enema (both Mesalamine) for the first time in 5 years since my diagnosis without pain. Every other time I've tried to come off in the past I would quickly get worse with pretty severe cramps, So while it might seem like the SCD didn't do a ton compared to before, this is huge for me.

I am scheduling another colonoscopy soon, but what do you guys think? I was very happy about this diet allowing me to be off my meds finally (and my liver enzymes therefore finally being back in the normal range) but seeing that blood was a big letdown because even though I feel fine I know that is a huge problem. I will of course talk to my GI doctor but I am wondering what else I can do. I have tried pretty much every supplement out there people typically recommend. Fish oil, Curcumin, Vitamin D, some other things that had no effect (astaxathin, VSL probiotics, slippery elm bark, glutamine, etc). I really don't want to make the jump to immunosuppresant drugs or biological drugs, and I don't want to go back on corticosteroids. I also have some mild cardiomyopathy (I'm only 25) so just another reason I don't want more drugs. I don't see what else I could do diet wise though unless I just live off meats and vegetables.....which did have me having much more perfect stools but it just wasn't a lifelong sustainable diet.

Any advice/thoughts are appreciated

Why are you off RX meds? That is not part of SCD and you should be using everything (meds and diet) to stay healthy unless the RX is making you worse. Mesalamine enemas are especially beneficial for bleeding.

Peanut butter and other high fiber foods cause bleeding for me so that could be a cause for you. SCD was a start for me but ultimately I had to develop my own safe food list by keeping a food diary and letting my gut tell me what it could handle.

The only fiber pill my cranky gut approves of is unflavored Citrucel caplets with methycellulose, a very gentle fiber type.

You know, there isn't much evidence that any of that stuff you're doing (or have done int he past) has a beneficial impact on UC inflammation. It's great if you have luck, and I wish you the best, but I know in my case none of that would have done one iota. When it really comes down to it, it's likely you're treating the symptoms and not the root problem. If you make the symptoms tolerable, is that enough? For me, I didn't feel like it was enough to have reduced symptoms, knowing inflammation and unpredictability was running rampant - but that's just me. I need to know my future is full of open doors - with UC every door was closed. I'd get back on the meds, especially considering they are the lowest lvl. Maybe mesalamine in addition to your diet can get you back to 100%.

OK so it seems you're all in agreement I shouldn't have come off of the meds :\

I guess I just read so many positive reviews of the SCD, and it seemed like a lot of people do eventually come off all of their meds.

Additionally, my liver enzyme (ALT specifically) has been elevated for 2+ years now. Coming off the mesalamine resulted in the lowest ALT value in years.


Do you guys think I should get back on the Asacol and Rowasa ASAP or do you think I should wait until my next colonoscopy? I really didn't notice any difference in how I felt or my stool when I came off (which, as mentioned, is the first time that's been the case since I started the meds 5 years ago).

Imagardener2 what safe foods have you found for your list? I've been keeping a lot but it really seems any time I add a significant amount of something besides meat, vegetables, and oil, I get worse. I was having mostly 3-4's on the stool chart with just meat, vegetables, and oil but it just wasn't sustainable. Also since my stools are typically on the higher end (5-6 now) I feel like more fiber might be necessary? I don't know though.

Notsosicklygirl Which things specifically are you referring to? I've seen a number of studies showing the benefits of SCD and some other things

http://www.medscape.com/medline/abstract/23710677
Effect of natural polyphenols (Pycnogenol) on oxidative stress markers in children suffering from Crohn’s disease – a pilot study:
Pycnogenol at 2mg/kg positively influenced the parameters of oxidative stress in Crohn’s disease patients after 10 weeks of administration.

http://www.sciencedirect.com/science/article/pii/S0927776515301156
Oral administration of pH-sensitive curcumin-loaded microparticles for ulcerative colitis therapy

http://nutritionj.biomedcentral.com/articles/10.1186/1475-2891-13-5
An anti-inflammatory diet as a treatment for inflammatory bowel disease: a case series report
http://www.ncbi.nlm.nih.gov/pubmed/26655069
Specific carbohydrate diet for pediatric IBD in clinical practice within an academic IBD center

http://www.wjgnet.com/1007-9327/full/v22/i6/2111.htm
Response to strict and liberalized specific carbohydrate diet in pediatric Crohn’s disease

http://journals.lww.com/jpgn/Fulltext/2014/01000/Nutritional_Therapy_in_Pediatric_Crohn_Disease__.22.aspx
Nutritional Therapy in Pediatric Crohn Disease: The Specific Carbohydrate Diet

What have you found to work for you then Notsosicklygirl?


Thank you everyone

curcumin is definitely studied and has some research behind it. If SCD was so successful, everyone would do it. The reason I don't believe in it being a treatment (for everyone - for some perhaps), is because I tried it and it didn't provide a positive result. We all want to take the least toxic drugs and live a normal life, wouldn't it be great if everyone could stop grain and sugar and whatever worked for them and be free of UC?

Nothing worked for me. I had surgery & I've been free of drugs since...

notsosicklygirl said...
curcumin is definitely studied and has some research behind it. If SCD was so successful, everyone would do it . The reason I don't believe in it being a treatment (for everyone - for some perhaps), is because I tried it and it didn't provide a positive result. We all want to take the least toxic drugs and live a normal life, wouldn't it be great if everyone could stop grain and sugar and whatever worked for them and be free of UC?

Nothing worked for me. I had surgery & I've been free of drugs since...

Well that bolded part isn't entirely true. Many many people would rather take drugs than change their diet, but I agree it clearly doesn't work on everyone.

Sorry nothing worked for you....so you've been essentially "cured" since your surgery? Unfortunately my doctors don't have a definitive diagnosis. First it was proctitis, then they said it was pancolitis because it went in different spots throughout, then they called it Crohn's, then they called it indeterminate colitis most recently. That's been with 3 different GI doctors so it's not been consistent. But my point being I'm not sure if surgery would even be an option because my understanding is it cures colitis but not Crohns.

brucen36 said...
SCD kept me meds free for about 10 years. But it depends on how advanced your disease is. At some point you will need both meds and SCD. The dextrose you're taking could be a problem.

Are you still med free or have you had to start taking them again. If so, what are you taking?

I was only using the dextrose for a few weeks.....it's just glucose so by SCD standards it should be completely legal. I felt the same on dextrose as I did on honey, which was about the same as I did on fruit. So I'm not sure if any one was better than the other for me unfortunately.

Post Edited (David1991) : 10/18/2016 11:49:53 AM (GMT-6)

David1991 said...
I am not eating the yogurt, no. I listened to a few podcasts on YouTube and it seemed a lot of people didn't use the yogurt. Others said it helped a ton, and others say it hurt them. What benefits have you noticed from the yogurt?

At first, it caused me some weird cramping which felt different from my normal UC cramping so I stopped eating it. I came back to it later and it was fine. I'll admit that sometimes I get lazy and don't feel like making it for a few weeks. Like anything diet related, its hard to pinpoint the exact benefits, but I can say that I've had several occasions where I started getting mild UC symptoms, then restarted eating the yogurt, and the symptoms subsided. I have to admit that I am not as strict on SCD as I used to be, I'm not 100 percent sold on it but feel like it is worth trying for a while. When I feel even the mildest UC symptoms, I go back to being very strict, double down on my medications and start up using my rowasa...this has kept me from another major flare up so far.

I remember when I tried SCD, i truly believed it would change my life and the course of my treatment. I had read all that marketing hoopla. I got sold on all the ingredients, a cookbook... They got me! Unfortunately SCD did little to nothing for my UC or my symptoms. The best UC diet I tried, is limiting food altogether. Of course I wouldn't recommend this as a long-term option, it's only helpful for getting from one day to the next. If I knew I had an appointment or a meeting, i'd avoid food completely. That could get me through a day without an accident or incident and I wouldn't need a diaper... I actually never went to the extent of wearing diapers, nor did I have any terrible accidents. I just figured, I had hit the point where it was, accept those things into my life or have surgery (or take steroids forever, be fat, pimply and miserable and i said NO WAY to that), I chose surgery & boy has it been an incredible journey in so many ways. To go from dependence on medication and toilets, to being free, is nothing I could ever express in words.

notsosicklygirl said...
I don't like to think of surgery as a cure, because it causes other issues. It's like removing an entire hand for an infection... It's not something I would recommend if medical options work, and definitely not in a case like yours where the diagnosis isn't solid - but yes, in some ways, I am cured.

I don't use drugs/supplements/diet, I don't have urgency, I eat what I want...

I wouldn't compare life after surgery to a healthy colon though. It's more like living with an ostomy, only internal. Your colon is where everything is compacted, without it, nothing is ever going to be like it was. It's not like going with a normal colon, it's more like emptying. You can go at the time of your choosing. I can go now or wait till after lunch. It can be convenient, but it's also more trips. For me, I was going all the time when I had UC, so I go less now, but for many, they have periods of ups and downs and usually with medication, they go less than the average j-poucher. The difference is that we are free of all the drugs and doctors. I usually empty when I pee, which isn't terrible, but of course I'd rather go once a day. I do like this this is predictable. I can go before I go somewhere and not worry about an urge coming on. All in all, it's worked out well for me. I would love a working colon, but this is the next best thing I suppose. You don't need to worry about surgery anyway, you have tons of options. I bet restarting your Asacol & rectals will get you back to 100%.

Thanks for sharing all that. It's fascinating...I'm glad there are a lot of options. I wonder....if this has been such a good option for you, how is it that there are people suffering from absolutely terrible colitis for sometimes 10+ years, why wouldn't they just get the surgery in that case if all else has failed?

How often do you have to 'empty'? Honestly I usually go 1-4x per day right now since I'm eating so much (actively gaining weight for lifting purposes) so I made frequent trips anyway.

But yes for now I am hoping the meds can be all I need for a while

Uniform Charlie said...

David1991 said...
I am not eating the yogurt, no. I listened to a few podcasts on YouTube and it seemed a lot of people didn't use the yogurt. Others said it helped a ton, and others say it hurt them. What benefits have you noticed from the yogurt?

At first, it caused me some weird cramping which felt different from my normal UC cramping so I stopped eating it. I came back to it later and it was fine. I'll admit that sometimes I get lazy and don't feel like making it for a few weeks. Like anything diet related, its hard to pinpoint the exact benefits, but I can say that I've had several occasions where I started getting mild UC symptoms, then restarted eating the yogurt, and the symptoms subsided. I have to admit that I am not as strict on SCD as I used to be, I'm not 100 percent sold on it but feel like it is worth trying for a while. When I feel even the mildest UC symptoms, I go back to being very strict, double down on my medications and start up using my rowasa...this has kept me from another major flare up so far.

Yea I think I can stay out of a flare like this but as someone mentioned earlier I'm concerned about just letting there be this low grade inflammation going on at all times. Like if I'm not trying it correctly maybe I'll FEEL fine and not like I'm in a flare but then end up having inflammation for years on end, increasing my risk of colon cancer and other issues

iPoop said...
"Many many people would rather take drugs than change their diet." Not necessarily true. I tried diet modifications and alternatives and they did absolutely nothing for me. The very strongest uc medications gave me remission. It's not that I chose not to, at all. It's all a matter of what worked for my uc.

I truly wish one treatment worked for everyone, but it's not that simple. One size never fits all, rather, it's highly individual.

And you said you discontinued all of your uc medications because you read positive stories of how others had after SCD. That can be a mistake, remember the bit about one size doesn't fit all? The other bit about glowing internet testimonials is no one follows up that they flared quite horribly just 6 months later...

I was saying many people, not all people of course lol. Of course many people would be willing to make diet changes and then it just doesn't work for them.

David1991 said...

notsosicklygirl said...
I don't like to think of surgery as a cure, because it causes other issues. It's like removing an entire hand for an infection... It's not something I would recommend if medical options work, and definitely not in a case like yours where the diagnosis isn't solid - but yes, in some ways, I am cured.

I don't use drugs/supplements/diet, I don't have urgency, I eat what I want...

I wouldn't compare life after surgery to a healthy colon though. It's more like living with an ostomy, only internal. Your colon is where everything is compacted, without it, nothing is ever going to be like it was. It's not like going with a normal colon, it's more like emptying. You can go at the time of your choosing. I can go now or wait till after lunch. It can be convenient, but it's also more trips. For me, I was going all the time when I had UC, so I go less now, but for many, they have periods of ups and downs and usually with medication, they go less than the average j-poucher. The difference is that we are free of all the drugs and doctors. I usually empty when I pee, which isn't terrible, but of course I'd rather go once a day. I do like this this is predictable. I can go before I go somewhere and not worry about an urge coming on. All in all, it's worked out well for me. I would love a working colon, but this is the next best thing I suppose. You don't need to worry about surgery anyway, you have tons of options. I bet restarting your Asacol & rectals will get you back to 100%.

Thanks for sharing all that. It's fascinating...I'm glad there are a lot of options. I wonder....if this has been such a good option for you, how is it that there are people suffering from absolutely terrible colitis for sometimes 10+ years, why wouldn't they just get the surgery in that case if all else has failed?

How often do you have to 'empty'? Honestly I usually go 1-4x per day right now since I'm eating so much (actively gaining weight for lifting purposes) so I made frequent trips anyway.

But yes for now I am hoping the meds can be all I need for a while

I think the main reason people don't have surgery is because it's risky. There's really no way to know if you're the ideal candidate or how your body will adjust. The reality is, the percent of people who are happy they had surgery is quite high, but that doesn't mean everyone has what you would consider a great result. Some people go 12x a day and they are happy with that. While I can say I don't desire to go to the toilet that often, I can also say, I can understand being OK with it, if I am free of the UC.

I go about 6-8x myself. I usually go more than I have to because I am in the bathroom so I figure "Why not?". I have not tried imodium since surgery either. I know some jpouchers use it daily and it can help with consistency and reduce trips. Maybe someday I will give it a shot. just can't see taking medication to reduce it by 1 or 2 trips. An extra trip doesn't bother me. The one thing I do not like, is getting up in the night to pee or poop. Usually I am up once, especially if I eat late or go to bed early. Knowing many people get up, is one of the things that put me off to the idea of surgery for a long time. I am not a good sleeper either - I never sleep well regardless.

notsosicklygirl said...

I think the main reason people don't have surgery is because it's risky. There's really no way to know if you're the ideal candidate or how your body will adjust. The reality is, the percent of people who are happy they had surgery is quite high, but that doesn't mean everyone has what you would consider a great result. Some people go 12x a day and they are happy with that. While I can say I don't desire to go to the toilet that often, I can also say, I can understand being OK with it, if I am free of the UC.

I go about 6-8x myself. I usually go more than I have to because I am in the bathroom so I figure "Why not?". I have not tried imodium since surgery either. I know some jpouchers use it daily and it can help with consistency and reduce trips. Maybe someday I will give it a shot. just can't see taking medication to reduce it by 1 or 2 trips. An extra trip doesn't bother me. The one thing I do not like, is getting up in the night to pee or poop. Usually I am up once, especially if I eat late or go to bed early. Knowing many people get up, is one of the things that put me off to the idea of surgery for a long time. I am not a good sleeper either - I never sleep well regardless.

Yea 6-8 isn't so terrible. I wake up 1-2x per night to pee anyway and have since I was in high school lol so that would be about the same for me.

Bloom93 said...
I would suggest to set aside the peanut butter . If you were able to gain weight and symptoms controlled with SCD diet - then continue the same and slowly add more SCD legal foods as your colon heals.
Blood being bright red indicates it's from the extreme lower end - so Canasa suppositories or rectal enemas are the best option.

I will go for colonoscopy only if more occurrances of blood happens and symptom worsens- as to me -the prep and invasion will upset the slowly healing colon on SCD diet.

DD has very good results with SCD diet regarding symptoms and weight gain but fecal transplant gave the complete remission to this date...

Best wishes...

I haven't looked into fecal transplants at all really, but that's awesome that you had success with it.


So it seems everyone thinks I should be going back on my medications? Should I do both the Asacol Pills and the Rowasa enema?