Fistula Feedback


#1

I do apologize if this is a bit gross, but I am curious if anyone has had similar issues. Please, if gross medical conditions bother you, leave now :expressionless: This post is not trolling, it is 100% genuine and I am interested in positive feedback. I am trying to keep this as non-gross and professional as possible. Please return the favor. I am trying to get better, but I know this condition is not unique to me.

This week I saw a specialist physician who believes I may have a fistula of the not so nice variety (link warning) due to Crohn’s disease to which I am genetically predispositioned (this disease killed my grandmother and affected my brother very severely). More testing is required, and I am going to see a different specialist on Monday to go down that road. However, my doctor and I agree that the symptoms are consistent, which warrants testing by the proper specialist. My gut feeling is that I will test positive.

Here is what I did not tell the first specialist. I consume Soylent. When I am on Soylent, the symptoms dry up. Essentially, I have a “difficult” patch of skin in the area of that second link. It has the symptoms that Wikipedia mentions. When I am on Soylent, the symptoms decrease and it feels better even if it does not heal 100%. I am not sure if these medical professionals are ready for me to talk about this specific issue in the context of my “medical experiment” with Soylent.

Here are my questions to the Soylent community:

  1. Have you discussed Soylent with your medical provider? Primary care physican, a specialist, a nurse friend, etc.? What was the feedback?
  2. Do you have any type of gastrointestinal issue and you are using Soylent? What were the results?
  3. Have you had colo-rectal surgery in the past, and you use or have used Soylent, DIY or otherwise? there is a very real possibility that I may be in this category soon, I am interested in any feedback.
  4. Most importantly: anyone have the specific issue that may be my issue if the tests confirm it? What were your experiences?

I appreciate people keeping the discussion civil and not gross. Personally nothing bothers me, but I understand the social norms are such that this is a discussion not suited for polite conversation. Feel free to PM me if you need to provide details that do not conform to the forum guidelines.

One point to keep in mind is that since the last office visit I am eating traditional food which within 12 hours flared up the symptoms as it normally does. I want an awful, red, infected patch of skin so the next specialist has something to diagnose. Bad as it sounds, I have been living with this condition for over four years. I want an answer, even if it means some pain and discomfort in the process.


#2

Thanks for sharing with us. I’d be interested to see what your doctor has to say when you do decide to tell him about Soylent and it’s benefits for you.


#3

I will definitely share the results, hopefully Monday but probably not. These things typically take time.

I believe it is important to discuss medical issues related to nutrition and digestion in the context of Soylent. We are still early in the liquid diet revolution, but eventually we will want studies done not only on the “normal” profile but what about those of us who are high risk for certain diseases? What if Soylent could sidestep Crohn’s disease entirely? Sickle-cell Disease? Or other digestive/nutritional diseases? Anecdotes are great, scientific studies are better. Let the experts correct for bias, population issues, etc.


#4

The biggest problem with Crohn’s disease is that it’s basically a catch-all for “there’s one of these set symptoms wrong with you and no other explanation”; I wouldn’t be surprised if in 20-30 years it gets split into 5 or so sub-diseases. So any studies they can do will probably have to include ulcerative colitis and some other diseases because they’re so similar, and data points can be heavily different just depending on the person.

In the mean time, this could be related to the fact that Soylent pretty drastically alters your gut flora. I will admit that it’s kind of weird that the symptoms come back when you’re not on Soylent, since your flora shouldn’t really pop back to how they were overnight.

Anyway, if it’s any help, my husband has Crohn’s and will be able to add another datapoint if he likes my Soylent. (He’s already had a resectioning due to three fistulas.) I wouldn’t be surprised if there are more people in the forums that have it as well.


#5

And why on earth would you do that?


#6

You might just say that you’ve found your diet to have a large effect on your condition. Tell your doctor you tried a special diet and it seemed to quiet things down quite a bit, but you went back on your previous one so he’d have something to diagnose. Do as much talking about its effects as you can before you pull out the nutrition sheet (I’d take either the nutrition facts and/or the blog posts explaining each ingredient so you can tell them -exactly- what you’ve been eating) so they don’t get the negative ideas before they see the positive effects.

The fact that your diet affects your condition may be a useful piece of information when they go to diagnose, so you should definitely share this with your doctors.


#7

But why not mention soylent explicitly?


#8

Letting the doctor know what you are eating is important for proper diagnosis. @ruipacheco doctors could be biased by a name. Better to provide the nutrient info and go from there.


#9

Just tell him what it is and let him draw his own conclusions. He can’t be that stupid if s/he’s a doctor.


#10

Sadly, in the US, they can be. I had problems sleeping for a while and went to see a doctor. He already had a prescription for an anti-depressant typed up on the computer before he even saw me. I had less than 90 seconds of face-to-face time with him before he left. Thanks, “Patient First!”


#11

I would definitely tell your doctors about your liquid food diet and how your symptoms are affected when you’re on it.

Doctors who work with gastrointestinal issues are no strangers to liquid diets, and often have to put patients on them for a variety of conditions. These guys invented Ensure and the like. Knowledge of how a liquid diet affects your symptoms may help direct the treatment and diagnosis.

Talk to your doctors.


#12

I second @MentalNomad – you should talk to your healthcare providers. I’m in cardiac rehab, and my physiologist was very receptive to me drinking my DIY soylent. I showed her the nutritional breakdown ( mine is a very low fat version). She appreciated me asking about some of the nutrient values. I was a little surprised, but she was cool.


#13

Its an interesting topic. I have been “diagnosed” with Irritable Bowel Syndrome (IBS). I put it in quotes because it’s another of those diseases of exclusion - Doctor can’t find out whats wrong so its a catchall bucket. Only through my own trial and error have I started to find the foods that cause flareups (crippling violent diarrhea, or maybe another week I wont have a bowel movement for 7-8 days, extreme fatigue, gas, bloating, rectal bleeding). Eat them and I have symptoms, avoid them and I pretty much don’t. At no point did my GI specialist talk to me about food, or how to do an elimination diet or anything at all regarding what to do naturally to ease symptoms based on diet. We did a colonoscopy, an endoscopy, a gall bladder scan with nuclear medicine, and on and on and on. After all was said and done, he had no solution and said “if you have more flareups and they are really bothering you, come back in as there are some medications we can try”. I relay all this because if a gastroenterologist who specializes in gut disease doesn’t bring food into the diagnostics discussion, you can bet most other doctors won’t either and it’s because they’re not trained to. Personally I wouldn’t bother telling mine one way or the other if I need to go back in the future. Maybe you can ask yours what his thoughts are on different foods and ask if he has suggestions, but I certainly wouldn’t feel obligated to discuss what you consume - especially if he doesn’t care enough to ask in the first place. Sorry, my cynicism with doctors may be showing slightly.


#14

Thanks for all the feedback. Sorry I couldn’t jump back in sooner, pesky job got in the way today :slight_smile:

I will discuss my experiment (sample size: 1) with the surgeon on Monday.


#15

Looks like I just have a nasty infection that refuses to go away, no Crohn’s or anything else. That is sort of a relief: I do not have any nasty disease, but I also do not have an explanation beyond what I have already received (which got me nowhere).

When I explained my diet as “it is like Ensure Plus, but cheaper” nobody seemed to think anything of it.


#16

Glad it’s not something clearly bad; hope you feel better soon.

When my oral surgeon needed to know what I’d last eaten before going under to have all the wisdom teeth out, I ended up saying it was a protein shake with rice protein and oat flour, and they were perfectly satisfied with that. (Then it was awfully handy to have Soylent on hand while my mouth was healing.)