Please! very sick and need input :( Thinking about seeing a naturopathic doctor

So sorry you are having a hard time and feeling terrible. It seems obvious that you don't have confidence in your doctor and something needs to change treatment wise. I think you need a second opinion from a GI that you can trust. Sometimes surgery helps when nothing else can, but it should be your decision based on information that you are able to have confidence in coming from a doctor who you feel has your best interest at heart. Not saying that the natural or alternative approach won't help, but your weight concerns me, you do seem pretty sick and if your doctor isn't helping you need to find a good one who will. The good docs are out there. Please keep us updated on how you are doing.

Hi Kell
I am sorry you are going through so much. This time is meant to be focused on fun and your future, not this DD.

I am a member of a number of forums and unfortunately this is what I have found. Most GIs only know, or want to know, about big pharma drug treatment. Your experience seems pretty consistent with most folks I read about. Additionally few folks find long term healing with holistic docs. They simply do not know that much about Crohn's (Hope you prove this wrong if you go to a Holistic Doc).

I have found that finding an alternative path takes personal research. I know that is not a good answer when you are feeling so poorly, so sorry. Additionally, of course, there is no consensus on even the cause of Crohn's much less how to treat it.

As I understand it, the various camps are based around, 1) it is an infection - take antibiotics (there is a Dr. in Australia that is doing breakthrough work) 2) it is auto immune - take immune suppressors 3) it is a bacterial imbalance - restore bacterial health in your gut (diet, fecal transplant, I think worms fall here, but not sure). Of course as no one knows it could even be all three. For example, You wipe out all bacteria because you were on long term antibiotics, which screws up your immune system, allowing an infection to grow.... I am sure there are other hypothesis regarding cause, but I cannot think of any right now.

In my case, I was on long term antibiotics, so more antibiotics is not something I want to do. If it is auto immune, then I can not think of anything else to do except take immune suppressors. I really do not want to take the big guns, so will do just about anything to avoid them if possible.

Therefore, the only real potential for me to do anything is to get the gut back in balance, and there is much we can do about that. When I was first diagnosed I did not know about fecal transplants, and there is a certain yuck factor, that for me does not make it first choice. However, I will for sure try this before big drugs. The results are very very encouraging. I am not so sure about worms, but if I get into trouble I will do research here also, but I know very little about worms.

I said to myself, my gut is in trouble, we put food into it every day, there must be something that can be done re diet. I read the Makers Diet, and a bunch more books and studies. Rightly or wrongly I concluded that The Specific Carbohydrate Diet (SCD) was my path. It took 8 months before I saw improvement, but 5 years later I am still on the diet and have 100% clear guts as confirmed by both a colonoscopy and pill cam.

I am not trying to sell you on the SCD, but rather to provide a framework for research and analysis. I will also point out, that if you go to a Holistic Doc, then you will receive the benefit of only their research and bias. If they have heard of SCD, Makers, Low FodMap, Low Res, ... researched it and formed an opinion, then that bias will be included in any recommended plan. If not, then of course they will not present what they do not know as an option. Given the above, and my experience personally and from others, I have concluded, that to understand and evaluate all the options I have to do my own research and cannot rely on anyone including the GI or GP or a Holistic Doc. I know this is not a very good option for you when you feel so poorly but I do not see any other path.

In addition to diet, I also take LDN, which is to do with getting the immune response corrected. I take this, if I am honest, not because I fully understand, but for three reasons. 1) It has a very high success rate. 2) The drug has been around for something like 50 years and there are no known important side effects (some report more vivid dreams) 3) It is cheap 4) A lot of SCD folks take it

I also take a very low dose of Pentasa. This is my nod to main stream docs and pharma. Unlike LDN 1) It does not have a hich success rate 2) There are negative side effects and I get them at a higher dose 3) it is expensive 4) most SCD folks do not take it. Research says it is most probably, a waste but I am a bit chicken to take nothing that traditional docs prescribe.

In addition to the above I take both nutritional and healing supplements.

That describes my approach and conclusions. Hope this provides some help as a framework moving forward.

I hope you find a healing path that works for you

Dave

Hey Kello,
I wonder if enteral nutrition would work for you? You just take a liquid diet with formula and water. You can do it with Ensure or Ensure plus if you can tolerate that. Maybe this would help you gain weight as well as heal your guts. I tried it for a few weeks and it worked until I went back to regular food. I ground the Ensure up with ice cubes to make a kind of milkshake that is only slightly gross, but you get used to it quickly. The only thing is I run many miles a week so the amount of Ensure I needed turned my skin orange because of all the vitamin A in the formula. My dermatologist asked what the heck I was doing to turn my skin orange : )

Seek a new doctor, but not a naturopath. Or a homeopath, accupuncturist, chinese medicine doctor, etc.

Instead, find a new GI to run some tests to determine the current state of your disease and, just as importantly, treat your concerns with respect. You are very underweight and that could be causing many of your symptoms on its own. I also think you should see a dietitian to work out a plan for building your weight up. At this stage I wouldn't worry about being 'healthy': your body is probably not utilising most of the nutrients you give it anyway. In times of starvation, calories >>>> nutrition.

It also probably isn't a bad idea to have a consultation with a colorectal surgeon either. That doesn't commit you to having surgery - it just outline what your surgical options are. If you have a stricture, for example, then you can have a balloon dilatation, strictureplasty or resection, depending on what's most suitable.

Best of luck. Really hope you can get out of this miserable rut.

I am going to recommend you read through this post made last week by DawnC. Lots of information here. If someone can "link" it for me.....I don't know how to do that!!!!

https://www.healingwell.com/community/default.aspx?f=17&m=3254165

Below is my story. I wish you the best of luck.

Kelly.

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Hi Dawn,

I read your post yesterday and then had to take a walk and do some breathing before I replied to you. I was you, I was where you are, I made the same decisions you are making and it just about cost me my life.

I was first diagnosed with UC at 21 years old after losing a bunch of weight and constant D and blood in stools. It was so bad, I couldn't take a sip of water without doubling over in pain. A scope and a month of prednisone, I was "cured". No need to take follow up meds, nope, I'm good. It never actually went away, I think my coping mechanisms just got better.

Fast forward a couple years, another round of scopes with a diagnosis of Crohn's this time, more prednisone and a daily treatment of asacol, which I took only sporadically. I went to every homeopathic doctor I could find in two provinces. I bought more herbs, teas, and potions than I am proud to admit. I saw spiritual healers, drank tea made from God knows what and even paid $450 to another nut job that had me change the direction of my bed because I was facing the wrong way sleeping and it was affecting my bowels.

I have been where you are. Over the years, I just got used to being sick, used to the pain and tried to carry on normally. I got married, moved, bought a house, got pregnant, had a baby and started a new career. Meanwhile the Crohn's was ravaging my body causing irreparable damage. I kept telling myself that I was fine.

In 2010 while my husband was in Afghanistan, my doctor sent me to a new GI for a scope to see what was going on. I told her it was just the stress of hubby being gone, I was fine. I was so not fine.

The scope showed extensive scarring and damage in my large bowel with several strictures along the way. I am "lucky" in the sense that it only affected my large bowel and rectum/anus. Immediate prescription of prednisone along with Imuran. I went thru a series of meds (you all know the course of them) and finally ended up on Humira. I truly had no idea what the cost of my ignoring my disease would have on me until August 16, 2012 when I went for a scope to dilate a stricture.

Unbenounced to either myself or my GI, I had a perforation of my bowel caused by the dialation of one of the strictures. Again, I ignored the pain, went home for a day and finally when I couldn't take the pain anymore, went to a different hospital. I laid there for three days until they finally transferred me to the hospital where my GI was. When I arrived, the surgeon immediately took me into the OR. After surgery, he told my husband and 11 year old daughter that there was a very good chance I would not survive this surgery.

I woke up a week later.

I was opened up, flushed out with 25 litres of saline, given a temp loop ostomy, put in an induced coma on life support because they couldn't get my incision closed due to my stomach being so swollen from the toxins that had been leaking into me for three days.

When I was finally awake, I realized the extent of my disease, what it had done to my body and what my non-management of my disease and symptoms had almost cost me and my family. The guilt was overwhelming.

I lived with that loop for two years until I could get into a new surgeon to finish off where the first surgery ended. In those two years, I continued on Humira in hopes of saving my large bowel and hoping to be reconnected even tho deep down, I knew that was never going to happen.

I am now eight weeks out from my total proctectomy and rectum removal. I have a permanent ileostomy (Lily) and a Barbie butt (sewn closed). Effectively my Crohn's is gone. There is no evidence from the surgery or my MRI that the small bowel is affected at all. My GI has told me that after my type of surgery and with the confirmation of the MRI, patients like me are 99% free of Crohn's and that I shouldn't have to take any meds ever again.

Well, as one who ignored the disease for so long, I have a hard time processing that information and don't truly believe that Crohn's is EVER gone, we all know it can reoccur anywhere at any time. However, I am cautiously optimistic having received my blood work back yesterday. It's all normal. NORMAL. It hasn't been normal in 20 years. I haven't felt pain free in 20 years, I don't hurt anywhere. I have never had the energy that I have now. I don't feel sick anymore. I do however, have an appointment with him every three months for a year because I am not convinced.

I have three doses of Humira left in my fridge. My husband keeps asking me when I am going to throw them out. I say, I'm not. As long as they are in the fridge, I have a constant reminder of where I was and that my disease just about killed me. I told my GI that and he laughed and asked me to make sure I threw them out after they expire.

Do what you feel you need to do but don't wait too long. This is a nasty, unforgiving disease that never goes away and doesn't care that you don't want to take the biologics. It will continue to destroy what it can while you wait for whatever "potion of the month" starts to work. I know because that's what I did and I regret every single moment of not listening to my doctors and my family. I almost lost my life and left my daughter without a mom, my husband without a wife and my parents without a daughter. Don't be me. Listen to the professionals and the wealth of knowledge on this site.

Crohn's is nothing to fool around with. EVER.

I wish you the best.

Kelly

Since you are in such a serious state and at a low weight, I would suggest trying a different biologic to get on track then after you put on a few pounds, transition or use alternative meds and diet in conjunction with your pharmaceuticals. I use many alternatives but also still take my meds bc neither hold me exclusively.

Take care

Doctors only go through very minimal nutritional education. There is that old saying "you are what you eat" I would strongly advise going to alternative doctors like a naturapath. I was very sick when I was first diagnosed at 18 in 1999. I went through about 3 doctors each one telling me that I would be on medications the rest of my life and would have surgeries. Well, 15 years later no drugs or surgeries. I did have to go all organic as my body could not process all the new GMO and pesticide Roundup laden foods. Remember, our food is not what it once was...it is pretty much 100% poison;that is why you see so many people suffering these days. The US gov was bought by big Ag and Big Pharm. DO your own research and certainly do your own research. NO stone unturned! Good luck, everyone can get better.

SCD works for some. It had a better than 90% reduction in symptoms in most studies. It is not100% but potentially something for you to consider.
Healing thoughts
Dave