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Crohn's Disease
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Posted 6/24/2013 8:53 AM (GMT -5)
Hello everyone
im a 24 yr old female who has been diagnosed with crohns from the age of 19... I had problems for couple of years before that but it took a while to get answers, initially they thought it was pelvic inflammatory disease and I also got diagnosed with endometriosis beforehand - getting answers was definitely a relief!
so my dis-ease progression has been severe - I first started out on the steroids and then moved to pentasa and Imuran which only gave me more side effects (moody and aggressive, joint pain, stomach aches and then I got depressed...) I also got a perianal abcess which had to be drained and a seton was put in which kept the fistula open for close to a year.... so I then started on infliximab/remicade which was giving me some relief but my intuition was telling me to go the alternative route... so I did and I saw naturoapaths and took liquid herbal mixtures as well as aloe vera, fish oil, probiotics and natural antibiotics/anti-inflammatories (garlic/ oil or oregano and turmeric) and changed my diet... only problem I was not disciplined and did not maintain the changes constantly so my condition got so bad that I became anorexic and malnourished in so much pain that I could not walk, eat or sleep properly... the abdo pain was really bad so I allowed my mother to take me to the hospital.. I had 40cm of my ileum removed as well as my rotted appendix taken out I truly believe that I was too far gone to save myself no drugs or natural supplement would have helped at that stage... fear was driven into me by doctors to be compliant this time around and stay on the drugs, my surgery was in July last year and I have been whilst also taking all my natural supplements and maintaining a healthy diet, I thought to sort of integrate the two worlds so they balance each other out... and now I have a rectovaginal fistula... about a month ago the seton from my perianal abcess broke and came out and maybe this is my bodys way of creating some kind of drainage from the inside out??... anyhow Im really angry and frustrated as you do what you are told and now I have fecal matter coming out of my vagina.... great position to be in but I know everything happens for a reason and now I feel like I want to go completely natural again as It cant get much worse than this.... is there anyone out there who has had similar problems to me and was able to treat it naturally? I read a lot about people with mild symptoms getting off meds but anyone with fistulas able to do it? Im desperate and this is not the quality of life I want to live.. I have pushed my partner away, marriage and kids was on my priority list and I feel like this dis-ease is controlling me and I want it to be the other way around... any words of advice would be greatly appreciated  
Posted 6/24/2013 9:43 AM (GMT -5)
There's somebody on here who reckoned strict compliance with the SCD diet healed his two rectal fistulas (he'll probably post). What meds are you on? What state is your Crohn's in? Before abandoning your meds and jumping into diet, or whatever, speak to your doctors and find out what's happening with your Crohn's. You need to know if the meds are doing anything or not. Also, maybe another seton can be placed.

I don't wish to scare you, but things can 'get worse than this'. Believe me, I know where you're coming from with the disappointment. But you have a serious medical condition which isn't going to get better on its own and certainly not with unproven 'natural' supplements. I hope that diet can help you, but if it doesn't you are going to need the help of your doctors.

Also, my alarm bells rang at anorexia. I ended up in that state too. I sorta could control the symptoms with eating less, so I ended up eating less and less, but it did zero to halt the progression of my disease. Eat enough, more than the RDA of 2000 calories for women if you have malabsorption issues. It will help both body and brain. Best of luck.
Posted 6/24/2013 9:53 AM (GMT -5)
Great response NCOT.

Welcome to the forum, looking_4_answers. Please stay on your biologics and/or talk to your DRs about why your disease is not being controlled by these meds (maybe you need a higher dose, closer frequency, or switch in meds). Go ahead and be fully compliant with SCD - it cannot hurt and will probably help - but you do need calories to heal.
Posted 6/24/2013 9:57 AM (GMT -5)
Thanks, kazbern :p

Anyway, I second what kazbern says. The biologics are the best meds for Crohn's by a long way, but they do have a frustrating tendency to stop working eventually (not always, but often). Often the dose needs to be increased, or you need a switch in meds to get a response again.
Posted 6/24/2013 11:18 AM (GMT -5)
just has to be another way than this viscous cycle... ill keep u posted on where I go from here thanks
Posted 6/24/2013 11:27 AM (GMT -5)
im currently on infliximab tried steroids Imuran pentasa all of that stuff n they didn't help me... I feel ok with my crohns atm but its the fistulas that are giving me trouble... and my GI specialist told me that even though I may feel symptom free on infliximab it may not actually be stopping the inflammation... so then what is the point?? our bodies are extremely intelligent and I believe this is happening to us because of a combination of physical/emotional/mental/spiritual stress... how can we all of a sudden develop an autoimmune disease for no apparent reason? what happened to the logics of cause and effect? action/reaction?? if we were born with crohns maybe I wouldn't be so defensive and I wouldn't object to the notion that we now have this issue for the rest of our lives and only drugs will help... we got to this place for a reason and im not prepared to accept this disease and let it live with me for the rest of my life sorry guys not today anyway
Posted 6/24/2013 11:39 AM (GMT -5)
Here's another theory. Your digestive process is broken because the gut biota you're supposed to have has been disrupted. You can try to replace the good bacteria by taking probiotics, but in someone with IBD it's probably too hard to maintain the right biota. You need the meds to help with the disease process. SCD is a reasonable way to try an replenish and maintain the right gut biota.
Posted 6/24/2013 11:49 AM (GMT -5)
so then kazbern... based on your theory, once the gut flora has been restored.. you wont need the drugs then? I don't have IBD I have crohns I didn't think IBD was autoimmune?
Posted 6/24/2013 12:05 PM (GMT -5)
IBD = inflammatory bowel disease. Crohn's is one of the IBDs.

My guess is that you will not be able to maintain a normal gut flora because your digestive system is diseased. That's why people on SCD must stay on SCD. The amount of probiotics in the homemade yogurt is quite extraordinary and I'd guess you don't need to spend any money of VSL#3 if you are eating that yogurt.

Most researchers believe IBD is an autoimmune disease.
Posted 6/24/2013 1:46 PM (GMT -5)
This is how it was explained to me (very simplified). If I'm wrong, I hope someone corrects me. :)

The way our immune system works is that we have antibodies that go around looking for foreign invaders. The recognize them based on their shape; it's sort of like a puzzle piece. The antibody, when it finds the shape it matches (such as chicken pox), will latch onto it and send out a cry for help. The body begins making more of those exact same antibodies to go around looking for more of the problem. They attach on, weight it down, and it gets destroyed.

Each person is born with natural antibodies from parents, but there's usually only one or two. So when we get a vaccine, we intentionally expose ourselves to that disease so that our body can make more antibodies of the exact same shape to always be on the lookout. So instead of just having one that's having to travel the whole body looking for it's matching piece, there are now thousands.

What happens with autoimmune diseases is that you become exposed to something bad that has a very, very similar shape to something natural already in your body. Once that is fought off, the body mistakenly thinks that your intestines (or whatever it is that's being attacked, like with lupus or MS) is that same disease it just destroyed. It's like a wrong puzzle piece that fits but needs to be wedged in. It's so close enough to the same shape that you think it's supposed to go there. So your body thinks that the problem is still there and keeps attacking the wrong puzzle pieces because it's so close. There's no way to tell your body that it's made a mistake because the antibodies are already created thinking that they're matching up with the correct shape.

What might be considered hereditary or what you're born with is the tendency of your immune system to make those kind of mistakes. That's why people with one autoimmune disease can often eventually develop another.

I hope that makes sense. It's what was explained to me when I first got diagnosed and starting asking questions.
Posted 6/24/2013 2:38 PM (GMT -5)
I think a current theory about how the cascade of autoimmune response starts is the leaky gut theory. This is something that happens when the epithelial lining of your gut is breached. The epithelial lining is theorized to be a byproduct of the bacteria living in the gut - when the bacteria aren't doing their job, the lining isn't as strong, and products of digestion (proteins, sugars, etc.) can leak through the lining and into the blood stream where they don't belong, triggering an immune response.

The bacteria in your gut are sensitive to antibiotics you take. Also to what you eat, to some degree, no one knows.
Posted 6/24/2013 4:46 PM (GMT -5)
Well, your GI is wrong or you misinterpreted what he said about Infliximab not stopping the inflammation. It doesn't stop the root cause of inflammation, but it certainly interrupts the inflammatory process at some stage. At the moment, researchers don't even know what the root cause of Crohn's is, let alone how to stop it. The root cause is probably determined by a combination of genetic, immunological and environmental factors in most people. There isn't a med or diet in the world which can currently stop Crohn's at the root cause, or, to put it another way, 'cure' Crohn's.

All the business about gut flora, it's just a theory so far. What are the 'bad' bacteria in Crohn's, for example? Nobody knows, apart from MAP, and even that's controversial and far from commonly accepted.

But if you wanna follow that line of reasoning, then there are GIs who treat Crohn's as a bacterial infection and treat it accordingly. I recommend looking up Thomas Borody, an Australian gastroenterologist who has developed a protocol for eliminating MAP, a bacterium long suspected of causing Crohn's disease in humans (it causes a similar disease in cows).

If you don't mind reading, here's a paper by Borody:

www.scirp.org/Journal/PaperInformation.aspx?paperid=19619

From what I've heard and seen on his website, he still treats most Crohn's patients the 'conventional' way, but uses his anti-MAP protocol for severe or non-responsive cases.
Posted 6/25/2013 7:42 AM (GMT -5)
I was at a point where life sucked as well. I had 3 issues and the Crohns symptoms was the least of my concern.

The bladder fistula was my number 1 enemy. The back pain I had from the pressure in my gut was the second. Then the Crohns pain.

I am still on Imuran, but the herbs and being on SCD for the past 6 months has greatly reduced my first and second issues. And I hope down the road it will resolve the Crohns as well.

I just started going to a naturaopath and she has put me on glutogenetics. Also she took my blood yesterday to see if I have any food allergies that may be causing me any grief.

You can't give up. You just have to find what works for you.
Posted 6/25/2013 8:28 AM (GMT -5)
scifigal2k,
That's not the way I heard it.... I got it this way "You have Crohn's disease. It's an autoimmune disease that is attacking your intestinal track."
Somebody gave you a very good analogy of what it appears to be. I defaulted to panic mode and read what ever turned up in my searches. I find the answers incomplete and worrisome at times.

I also did the 40 cm resection, last month. I am waiting on the hospital to schedule more tests to continue the search.

Faith is what you make it, that's where I'm at with Crohn's.

T
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