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[freedaday]

Hello fellow crohnies

My name is Emilee. I was diagnose last May (2015) with crohn's. They wanted to start me on some heavy medications after my colonoscopy. I ran like a scared rabbit and began to try and heal myself naturally. Here is my journey. I began with a 3 day water fast and then moved to a gluten free, dairy free diet. I had been having symptoms since January of 2015. I had severe bleeding, abdominal cramping and constant diarrhea. I think at that time I was at about 10 times a day. After my natural fast things seem to work. I had flare ups if I cheated. I also added smoking weed to my regime (I had smoke when I was younger so I wasn't opposed and after reading a thread on here thought I would try it) that stopped the cramps and diarrhea when they came on. For the most part I was "managing" Things started to get worse in Dec. of 2015 but not terrible. The pain was worse and the diarrhea was climbing to more like 17-20 times a day. Bleeding after 5 or 6 times to bathroom. Then something happened. In Feb of 2016 it went into high gear. There was no stopping the terrible pain and diarrhea once it started. I was getting worried. If I smoke it would definitely stop the pain and bathroom trips but that was just really for the symptoms. The reactions to food were just crazy. I felt like I could not eat anything without a reaction. I switched my diet to avocado, oatmeal, chicken, rice, white fish, carrots and not much more (can't think of all) so then after reading on here again. I tried something drastic. I went on a 10 only water fast. Of course my tummy felt GREAT! but I lost a LOT of weight and I had become very weak with a very slow heart beat (this was 2 weeks ago) Once I began to reintroduce food I began with a veggie broth (I call it a tea) it had garlic, carrots, kale, summer squash and an onion. I strained off all the veggies and then pureed the veggies to baby food. I reintroduced food with the broth only...that sat wonderfully, then added after two more days the puree, sat wonderful, things were looking good. I added avocado, great, oatmeal next...awesome. Then I tried a homemade potato salad (red potato, mayo, fresh chives, turkey bacon and fresh dill) bad....very very bad. So fasted again to clear out and then added greens (leaves) bad, very bad. Went back to just the things that worked well. I tried a few scrambled eggs. Good. White fish was next. that was great. Toma:sign0085:toes (roasted or pan seared) very good. All of my food was being cooked with olive oil and the only spices were salt and pepper (all of those were great. Then I tried sweet potato...sooooooooo bad...never again. Then I tried something interesting....malt o meal...wow that works AMAZING! It stops the bubbles and diarrhea. I now have a bowl daily to help with weird bubbles and minor cramping. I am still smoking IF I go into some bad situation (like the sweet potato or potato salad) today I tried ONE bite of egg salad (egg, mayo, salt and pepper) did not go well but I only had a bite so it passed, which tells me it is the may not red potato (I will try that again in a couple days) this is where I am today. I really think malto meal is a great thing for this....and that means I may be able to eat some bread. The journey continues. Sorry this is so long but it has been a long year. I would love thoughts on my story. Thank you for reading and thank you for all your helpful posts!

 

[ronroush7]

Thanks for sharing. I am glad that you have had some success.

 

[Scipio]

I'm glad you are finding some relief via strictly controlled diet, but I worry that you are focusing almost exclusively on controlling just the diarrhea. Crohn's is complex enough that there is a lot more going on down there than just the diarrhea.

In the absence of appropriate medication, even when you manage to get the diarrhea under control, the damage to your gut continues - sort of smoldering beneath the symptoms. If that damage accumulates long enough it will result in serious complication such as a fistula, abscess, or stricture or some combination of these. At that point you will probably be staring at major surgery.

My suggestion is that you work closely with GI who specializes in IBD and work together to develop a balanced approach of both diet and medication that stands a better chance of keep all aspects of the disease under control.

 

[freedaday]

Scipio, I am afraid. I haven't seen a GI since. Isn't it possible to heal with diet? I read in the Merk Manual that there is no real cure and people have been healed spontaneously. I am nervous about going medical because I had a bad experience that LED to this (I think) I have 8 children. 4 by C-section. My last I had a new doctor who encouraged me that I would surely die if I had another child because of my uterus and veins. She convinced me I needed a hysterectomy and I got one. All I have left is one ovary. 2 weeks after the surgery my stitches where my cervix once was came undone and my intestines began to descend out of me...you know...down south. I almost died and was rushed into immediate surgery. After 8 weeks of strict bedrest and diet I started getting symptoms. I was diagnosed with IBS when I was 20 and suffered gut problems as young as nine (I was severely abused as a child and then spent my life in foster homes) After this happened I tried to call my OBGYN and tell her that I was having terrible gut issues and the next call I got was a nurse who told me she dropped me as a patient and to contact a GI. So I did and of course colonoscopy was the first step. I just knew things would go worse...I got scared and never went back. Is there no one who has healed from diet? I know I am only managing but I hope that eventually I will heal. I don't want to live in medication

 

[ronroush7]

Scipio, I am afraid. I haven't seen a GI since. Isn't it possible to heal with diet? I read in the Merk Manual that there is no real cure and people have been healed spontaneously. I am nervous about going medical because I had a bad experience that LED to this (I think) I have 8 children. 4 by C-section. My last I had a new doctor who encouraged me that I would surely die if I had another child because of my uterus and veins. She convinced me I needed a hysterectomy and I got one. All I have left is one ovary. 2 weeks after the surgery my stitches where my cervix once was came undone and my intestines began to descend out of me...you know...down south. I almost died and was rushed into immediate surgery. After 8 weeks of strict bedrest and diet I started getting symptoms. I was diagnosed with IBS when I was 20 and suffered gut problems as young as nine (I was severely abused as a child and then spent my life in foster homes) After this happened I tried to call my OBGYN and tell her that I was having terrible gut issues and the next call I got was a nurse who told me she dropped me as a patient and to contact a GI. So I did and of course colonoscopy was the first step. I just knew things would go worse...I got scared and never went back. Is there no one who has healed from diet? I know I am only managing but I hope that eventually I will heal. I don't want to live in medication

There is a great section in here that deals with diet, nutrition and supplements or something similar. Take a look at it. At the same time, don't forsake being monitored by a doctor.

 

[Eridon2002]

Hi Freedaday, Crohn's differs immensely among people-cause, trigger, symptoms,etc. I believe diet is a huge part of the puzzle as is managing stress and keeping the gut microbiome healthy. However, Scipio is correct in that you never know what can be happening internally. There are many who are asymptomatic yet still inflammation and damage is occurring in their intestines. You should find a good GI doctor who will monitor you via bloodwork, colonoscopy, pill cam, etc to determine whether diet is sufficient to keep your inflammation down. I know the medication is scary but I wasn't on medication for 9 years and just had to have 22cm of my colon removed. I would also suggest looking at every single ingredient that goes into your body. For example, the pasta salad mayo has multiple ingredients could have a preservative that you are sensitive to. You could try making homemade mayo with out the "natural flavors"(commonly MSG) or "disodium EDTA"(abdominal discomfort is a known side effect) that are found in commercial mayo preparations. Also-look at the ingredients in turkey bacon; you'll have to break down all components to figure out what you are sensitive to.

 

[Scipio]

Isn't it possible to heal with diet?

The short answer is No, it's not possible to heal Crohn's with diet alone. As you have already shown, diet can play a huge role in helping you control the symptoms and making you feel better, but that's not the same thing as healing. And it's true that many people "heal" spontaneously in the sense that they go into remission. But in Crohn's the remissions are temporary. Without medicines to combat the inflammation the damage continues to accumulate and the symptoms eventually come back in a flare. The goal of the medical treatment is to induce and prolong the remissions and delay or prevent the flares.

I understand your reluctance to go to doctors, but Crohn's is a relentless and nasty enough opponent that it's really difficult to battle it alone. You really need a team, and the most important member of that team other than yourself is a well-trained, sympathetic GI, who specializes in IBD. Those doctors have made battling Crohn's the focus of their whole careers. A good doctor can be a huge help in your fight against this disease.

 

[MissLeopard83]

The short answer is No, it's not possible to heal Crohn's with diet alone. As you have already shown, diet can play a huge role in helping you control the symptoms and making you feel better, but that's not the same thing as healing. And it's true that many people "heal" spontaneously in the sense that they go into remission. But in Crohn's the remissions are temporary. Without medicines to combat the inflammation the damage continues to accumulate and the symptoms eventually come back in a flare. The goal of the medical treatment is to induce and prolong the remissions and delay or prevent the flares.

I understand your reluctance to go to doctors, but Crohn's is a relentless and nasty enough opponent that it's really difficult to battle it alone. You really need a team, and the most important member of that team other than yourself is a well-trained, sympathetic GI, who specializes in IBD. Those doctors have made battling Crohn's the focus of their whole careers. A good doctor can be a huge help in your fight against this disease.

This is very true. My non-blood-related aunt has really severe Crohn's disease that she's had since she was a teen. She eats VERY healthy and still has symptoms. She's been hospitalized several times due to very high fevers and infections. She now has a fistula that's been there for a few years, but she has been putting off surgery due to complications and the fact that she is a stay-at-home mom (she used to be a teacher but was constantly sick). She gets infusions regularly (not sure what she's on right now). While eating healthy certainly doesn't hurt, it is not a cure-all.

 

[ronroush7]

This is very true. My non-blood-related aunt has really severe Crohn's disease that she's had since she was a teen. She eats VERY healthy and still has symptoms. She's been hospitalized several times due to very high fevers and infections. She now has a fistula that's been there for a few years, but she has been putting off surgery due to complications and the fact that she is a stay-at-home mom (she used to be a teacher but was constantly sick). She gets infusions regularly (not sure what she's on right now). While eating healthy certainly doesn't hurt, it is not a cure-all.

I have a nutritionist who days you can do all the right things and still have a bad day.

 

[freedaday]

The other issue is this. I don't have health insurance. I did when I was first diagnosed but my husband got another job and we relocated to another state and now we cannot afford health insurance (thank you so much Mr. President) so I can't even see one...yet. Now we may be having some relief soon (my husband got a raise and will kick in in August but that still means a few months away and the only insurance we can afford is Medishare. I am not sure how GIs handle Medishare. Also. I have been reading a lot about CBD oil to combat crohn's. It is extracted from marijuana but removes 99% over THC so you are not getting "high" but the cannibidiol (don't think I spelled that right) are increased through breeding. It was designed specifically for Crohn's.

 

[ronroush7]

I hope you can find some kind of program to help financially.