My Battle with Crohn's Disease

[lsampson]

Hi, I am a 40-yr-old woman who was diagnosed with Crohn's disease when I was 20 yrs old. The stress of my first pregnancy brought on my first and most debilitating Crohn's flare-up. Doctors were unable to diagnose my condition during the pregnancy until a few months after my delivery. It was a high risk pregnancy...as was my second pregnancy...yet both babies survived and were healthy. I nearly lost my life through both pregnancies but the deliveries were a piece of cake compared to the pain and suffering during those 9 months.

I have had five surgeries and have been frustrated in that one surgery led to another and the residual scar tissue that caused problems later on down the line. I have an ileostomy and no large intestine left that took place in 2004. It is now eight years later and I am again having a flare-up in which the stump of rectum that was left in place has now been bleeding for the last eight months. I have seen a nutritionist to help with my diet and am very disappointed in the recommended Crohn's diet list she has given me since it is the same information I received when I was 20 yrs old and I know now from experience that this diet was very unhealthy and unproductive in helping Crohn's. So I'm back to the drawing board and hoping to get some helpful nutritional feedback from others who also suffer or have suffered from Crohn's disease to find what has helped them.

Based on the info I know to be a problem is refined foods and preservatives. I now have a food processor so I can juice to get more nutrients from veggies without consuming the pulp to make for better digestion. I have just started this processing this week, so if anyone has any suggestions I'm all ears. :rosette1:

 

[hlmurray99]

That all sounds incredibly frustrating. I recently, after a hospitalization for a partial bowel obstruction, was put on a low fiber diet. I borrowed my brother's juicer and have been juicing becasue I feel like it's my only option to consume anything healthy. I don't really have any advice, but just wanted to let you know youre not alone. I still don't have a clue what food are good or bad for me.

 

[David]

Hi there and welcome I'm glad you joined. Thank you for sharing your story though I'm sorry to see everything you've been through

1. When it comes to diet, I see the most success around here from people on the Specific Carbohydrate Diet or Paleo Diet. You can read about them in our Diet/Fitness forum.

2. With all those resections on top of the Crohn's Disease, vitamin, mineral and other nutrient deficiencies are common. Do you supplement at all? Do you get various vitamin and mineral levels tested? Proper supplementation can make a world of difference if you are indeed deficient.

Again, welcome to the community

 

[lsampson]

Thank you for your responses hlmurray99, I'm terribly sorry for your frustration as well, but it sounds like you have come to a positive solution by juicing to get the necessary vit/min needed in your diet.

Thank you David also for the VERY valuable links for more dietary insight. I have not had my vit/min tested by my doctor...only CBC info. I guess you could say I have been avoiding the dr office as long as possible to avoid all the many many meds and surgeries that confined me for over 12 years. I haven't needed medications or a GI dr in a long time, but now I have to go in tomorrow morning, so I will request those vit/min tests. Thanks for the suggestion. :thumleft:

About a year ago I tried a fruit/veggie juicing cleansing diet that I was only able to handle for 3 days (it made me too sick).
Then about two months ago when I realized I may have a possible Crohn's flare-up, I tried a only veggie (no fruits/acids) juicing diet and had MUCH better results without getting sick and less blood/discharge loss, however I lost 10 lbs in 4 days and became very weak. So I had to start eating all the other foods I used to eat previously to gain back my weight...which took me about two weeks to gain back. So now I'm back to square one again.
Although I do feel that veggie juicing was VERY beneficial, if only I could maintain my weight at the same time.
I did go to the web page link you suggested and I am very interested in working the paleo diet into my meal plans. I can't thank you enough for your insight and suggestions! I've never signed up for anything like this so I'm so excited to get such great information so quickly!!! :ylol:

 

[lsampson]

I forgot to mention that I do take Vit. D3 and B-12 about once a week...I probably need a lot more, but I am looking for a vitamin that contains a combination of all or many of the vit/min that I need daily. My aunt suggested that I take a corral calcium of some sort as well...

 

[David]

If you are indeed deficient in them due to Crohn's Disease, you're correct, that would VERY likely not be enough. And there are no multivitamins that would be enough either. Most of the time people with Crohn's Disease need to take substantially higher amounts than what is in the multivitamin.

Tests that I would demand from the doctor would be vitamin B12, folate, vitamin D, and magnesium. Additional requests would be potassium, zinc, B6, calcium, vitamin K and anything else they're willing to test. When the results come back, get the actual numbers, don't let them tell you, "You're normal" or, "You're low normal" or "You're deficient". Get the numbers. This will allow you to track them over time which is important. In addition, if you're comfortable sharing them with us, we can provide additional insight on these numbers as the reference ranges sometimes aren't as good as we might think.

You may need calcium and other trace minerals but I'm of the opinion that the whole coral calcium thing is more good marketing than good science.

 

[lsampson]

Wow, thank you SOOOOO much David!!! I will do my best to get this information now that I know what to ask for. It may take a few days to get results. I can't thank you enough!

 

[Snoflayk505]

Just wanted to chime in and share my SCD Diet success story There are lots of different intestinal health diets like GAPS, Paleo, SCD etc. I chose SCD and never looked back There are links in my signature and I would be happy to help you with any other information you need good luck to you.

 

[lsampson]

Thanks Snoflayk505, I know that diet plays a huge role in health and its very encouraging to hear from others experiences.

I just got back from the GI dr visit and she seems to think I am not having a Crohn's flare up since my small intestines and rectum have never been inflammed with Crohn's before and I have been symptom free for 8 years. She thinks it may be Diversion Colitis...which can act like Crohn's over a period of time. I'm not sure exactly what this is, but I definately like that she doesn't seem to think that Crohn's meds will help and suggests that she will research which kind of enema to order that can help for now. In the meantime, she has ordered labs for all the vit/min levels and added a few other tests...CBC, Metabolic panel, Celiac Disease...and if the enemas don't help with healing then a second opinion is recommended from another GI dr.

I just found a link that took me to a possible healing product called DigestaQure...aloe vera healing properties. I'm wondering if anyone knows about this product or knows if its worth looking into...especially since I'm not on any medications this may give me more healing time so as I can avoid having to take toxic medications if possible.

 

[Snoflayk505]

I have heard many had alot of success with aloe vera products! Im all about natural and would definitely try that if I ever flare again Let us know how you feel if you try the DigestaQure!

 

[David]

I just found a link that took me to a possible healing product called DigestaQure...aloe vera healing properties.

Be VERY careful with that sort of stuff and do your due diligence. There are a lot of really shady companies out there preying on people with IBD. Some are definitely dabbling in the aloe vera type products.

Give this thread a read in its entirety. Serovera is the company that makes DigestaQure.

 

[lsampson]

Wow, pretty scarry. I did reread the info on the main website and was a bit worried about not enough details, but when I clicked on the ingredients list it does have a link of references for the "healing components which have been demonstrated in over 400 studies conducted by hundreds of scientists, Ph.D.'s, M.D.'s, and natural healing physicians..." It all sounds goods, but how am I to know exactly how much of the ingredients are really truely in the supplements purchased since it seems that that is the biggest problem in ordering supplements anywhere...and how can I find a reliable brand that has been certified? Or what certifications should I be aware of and looking for?

Computers and technology are truly a blessing, but in the wrong hands it can be devastatingly disasterous for those of us who are naive like myself. I see how advertisement companies have already distorted our understanding of healthy foods in stores and restaurants, but I'm soooo glad to see people (including myself) becoming more and more aware of the scams that trick us into spending money on whichever company spends the most money on advertisements. I love watching the Dr. Oz show since he welcomes the challenges that each of us face in life so we can be more aware of how everything functions and what dangers to be aware of.

Knowledge is power and David you seem to be on the right track because of all the research you do to help protect vulnerable people like myself who are just looking for answers and healthier lifestyle changes. I can only pray that God will bless me with the ability to remember important information about good health tips so I can help others, myself, and my family so they will not have to suffer the way I did from autoimmune disorders. It seems the last couple days now I have spent all day reading and reading and reading before I had to see the Dr today, so I'm gonna take a breather and dive back in tomorrow. I'm on a mission to find better solutions and I thank ALL of my new found friends on this forum for sharing your knowledge and experience...it goes a long way!

 

[lsampson]

Btw David, thanks again for the links...I just read that
"Aloe Vera contains mucilaginous polysaccharides (very hard to digest for people with compromised digestive systems) and increases the release of tumor necrosis factor (what Remicade blocks) which is associated with IBD inflammation and increased immune stimulation."
Which I think means that the product offered by DigestaQure may cause more harm than good...especially if it increases the immune stimulation. Since I'm not really familiar with Diversion Colitis, yet I know that I have had Crohn's flare-ups from 1992-2004...I guess it would be better to be safe and not use the products than to be sorry and possible worsen my condition. Again, your insight and web links are very insightful and helpful in making better sound choices. Thanks! :ybiggrin:

 

[lsampson]

My 20-yr-old son (who is the same age I was when I had my first CD flare up) has an ulcerated bleeding anal fistula that his Dr has advised doing surgery to fix. He is here for the summer and returning to college early next week and not returning until next year. So he wants to hold off on surgery even though the Dr is concerned about it becoming absessed while he's gone. I am hoping that if I can find supplements that can help him by finding something that can help me too (vice versa) that supports the autoimmune system, then we can get through this together. Afterall, I feel responsible for passing on my DNA and/or eating/lifestyle habits to him...I owe it to both of us to find a better way.

 

[kiny]

Btw David, thanks again for the links...I just read that
"Aloe Vera contains mucilaginous polysaccharides (very hard to digest for people with compromised digestive systems) and increases the release of tumor necrosis factor (what Remicade blocks) which is associated with IBD inflammation and increased immune stimulation."

Don't really know what Aloe Vera does exactly, but I know it's not that simple. On burn wounds it's stopping TNF, but for crohn I don't know and I think no one really does. There are things like CLA that increase TNF and decrease TNF depending on what part of the body you're talking about, the fat or the muscle tissue. I just know that what Aloe Vera does isn't very simple and goes over my head.

 

[lsampson]

Thanks kiny, I'm not sure either...I read somewhere in another link that the gel part of the aloe is what causes problems. Idk. I need to read more, but the more I read the more questions I have and I keep getting sidetracked different directions cuz there's sooo much info out there on so many things. It's very very interesting. I seem to have memory struggles too so its frustrating having to research some things that I may have already looked for and then forgot until I read it again.

 

[kiny]

http://translate.google.com/translate?sl=auto&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.pathofysiologie.nl%2Foverig%2Faloe-vera%2F847%2F&act=url

I'm dutch if you need help with something that isn't translated correctly in English. You can see that what Aloe Vera does is pretty complex. If crohn are macrophages releasing TNF-alpha and Aloe Vera is helping the macrophages with apoptosis it might decrease TNF, but idk, just what I assume.

I took aloe vera and I have no idea if it helped (I have it with the Aloin removed, you should check for those they are safer)

It also isn't as clear cut that boosting the immune system is inherently bad for crohn, the increase in TNF is bad for crohn, but boosting the immune system isn't necessarily bad. People with crohn have a weakened immune system, and if something can help the immune system with apoptosis so there is less TNF getting released, you are still "boosting the immune system", and at the same time decreasing TNF.

 

[kiny]

Translated by hand here: http://www.crohnsforum.com/showthread.php?p=473183#post473183 I was bored and it made me reread it.

 

[lsampson]

Thanks kiny, that's very helpful to know. I guess if drs can try meds on patients then I don't see why patients can't try things (after researching of coarse) too...since, after all, the medical world says there is no cure for autoimmune disorders...so they are doing their research too. I've gotta do my part in being responsible for my own health too. :thumright:

 

[David]

By the way, a deficiency of short chain fatty acids is thought to be the cause of diversion colitis. Your doctor may want to look into giving you short chain fatty acids via enema.

 

[lsampson]

...a deficiency of short chain fatty acids is thought to be the cause of diversion colitis...

Thanks David, my doctor's office just called me about an hour or so ago after doing their own research and told me they called me in a prescription for the same thing you just mentioned above.

Do you think there is a particular food ingredient that is causing this shortage of short chain fatty acids?

 

[David]

Correct me if I'm wrong, but one of your surgeries has left a part of your bowel closed off to the flow of fecal matter, yes?

 

[lsampson]

Correct, I had my entire large intestine removed and they left the rectum in place while attaching an ileostomy bag. They gave me the option to reconnect the small intestine to the rectum within two years of the procedure, but I chose not to reconnect it since the bowel consistency was too watery.

 

[David]

That's what causes diversion colitis. Basically short chain fatty acids are created by colonic fermentation of fiber or starch (depending on the source you're reading) and colonocytes need those short chain fatty acids. When fecal matter doesn't pass through to a certain area of your bowel, then those colonocytes don't get the nutrition they need and an inflammatory reaction presents. Give them back their short chain fatty acids and hopefully they call off the strike and all will be well.

 

[lsampson]

Ok, its making more sense to me now. It sounds like these enemas are the only way to fix the deficiency.

 

[David]

Or take them up on the reconnection so fecal matter flows again. I'm not sure how well it will work after a colectomy but that may be a question for your doctor.

 

[lsampson]

Thanks David, after the ileostomy surgery my dr said I only had 2 years or less to reverse the surgery and its been eight years now.
If I would've known at that 2 yr marker that not reversing the surgery would cause diversion colitis or any other possible situations I don't know about, and that it could've been a possibility later on down the road maybe I could've made a better and more well informed decision.

With my previous surgeries it seems I am finding out the hard way about situations that arise from the damage that is irreversibly caused (after the fact) from the surgeries and scar tissues left behind. It's really frustrating...cuz the only things I was told was that any surgery can be a life threatening situation but not likely, and that the large intestine is so long that I will have plenty of intestines left, and surgery is going to make me feel better afterwards so I won't be in pain anymore. When I was 20 yrs old that was very releaving words to hear...besides the fact that I trusted my doctors to know what they were doing and they would fix everything.

Well, I'm now 40 yrs old...five surgeries later (since one led to another), the scar tissue from the surgeries (appendectomy...then gall bladder removal...then bowel resection) led to a bowel loop resection while 7 months pregnant (jeopardizing my son's fetus and myself). All those scar tissue areas caused three blockages, which led to my emergency resection of the large intestine (ileostomy).

What is confusing the most is that there is a lot of literature and books about people who have cured themselves of Crohn's and other autoimmune disorders, but when I try to contact them or try their products, they are unreachable for advice or can't give advice and/or their products are too expensive (especially since I couldn't work anymore due to health problems) and state insurance doesn't cover most naturopathic/herbal/etc treatments and office visits. :ymad:

I spent about two years using MannaTech (aloe vera) products trying to recover from a flare up (which seemed to help maintain but not heal) and couldn't afford to buy more and more and more product...while enduring many many outside pressures from doctors, family, friends, coworkers, etc to stop taking the supplements and do the surgery (bowel resection)...so when I finally broke down from all the pressures I quit the supplements and ended up in emergency surgery less than two weeks later resulting in an ileostomy.

Previously seeing a nutritionist didn't help either, except to maintain my weight by eating an unhealthy diet that was contributing to the medical problem that they weren't trying to heal...just maintain. :ybatty:

And conventional medicine options (since there is NO cure) is medications that can possibly maintain or stablize the condition temporarily...and until that stops working then the options consist of only steriods or surgery, since their objective wasn't to find the cause/root of the flare-up...just maintain it or cut it out. But at least insurance covers 80% of the expenses. :yfaint:

So after hearing these same things for years it gets frustrating. I wish I would've known about this website LONG ago!!! And I hope others aren't having to go this long painful route that I have taken. If anyone has a great personal story to share please let me know!

I didn't have a computer until about the last 4 years and spent over 12+ years in pain stuck to the closest bathroom. So you can imagine that once I had the ileostomy and was pain free I felt like a kid in a candy store being blessed to be alive still and participate in family functions after my husband and children stayed by my side through it all. We have been privileged to participate as a family in supporting my husband's coaching and sons back-to-back AAU national basketball championships as well as other sporting events. Now my kids are grown and having their own medical issues. So if anyone has helpful info, I'm all ears. I am definately going to start the SCD diet to start with so if anyone has any pointers let me know. Thanks for listening.

 

[David]

I can feel your frustration and pain I wish I had answers or words of wisdom, unfortunately I do not

*hugs*

And those people and companies that claim they can cure Crohn's, "Just buy our stuff!" sure do piss me off. They should be in jail for a long, long time.