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Posted 10/27/2009 4:57 PM (GMT 0)
Seems like some of us go through this journey trying to escape this disease. We usually take some time off of work/school and just focus on IBD 100%. I know I did this for a good 7 months and I go back to school in another month. For those of you that have done the same in the past, tell me if you have come to the same conclusions that I have so we can cut out the guess work for those going on the journey in the future:

1.You have a flare and are faced with medication you are afraid of or with surgery. Also usually you encounter someone with IBD who tells you he or she is on no medication and is doing well. This inspires you too look beyond allopathic medicine for answers.

2.First you try taking herbs that someone suggested or some that you found to be helpful on forums. You try stuff like boswellia, sacchromyces boullardi, slippery elm, etc., usually combining them in desperation. You often give up using them because you don't see much improvement especially if you're in a flare.

3.You try out Chinese herbal medicine + accupuncture and/or ayurvedic medicine and you don't see immediate results so you get discouraged.

4.Then you read Breaking the Vicious Cycle and start it with great enthusiasm because it's based on some science and has some followers. You don't see results for for the first three or four months, but then you see some improvement later on but you never really get perfect, and eating this way forever doesn't seem like a solution that's worth it. It also is a huge hassle to eat out and you realize your social life is suffering big time. However, meanwhile you'll stick with it as you investigate other options. You probably are still sticking with your medications at this point too just in case so it's hard to tease out if the diet is actually working. You read Raman Prasad's Colitis and Me and look at Crohnsboy's website and are inspired to stick it out with the diet.

5.Whole Foods is your new home. You try eating all organic, which some stick to and some don't based on expense.

6.You start reading a bunch of other nutrition books like The Caveman Diet and The China Study and try to prevent any other Western disease that you are convinced is due to refined carbohydrates and/or meat.

7.You read Life without Bread and see that this diet is more realistic (you can eat a couple oreos a day!) but you haven't seen anyone on these forums or anywhere else following this diet so you don't adopt it. Maybe you'll use it as maintenance diet once you finish the 2 years on SCD.

8.You Read Jini Patel Thompson's book Listen to Your Gut and think it's probably the best book out there, but you are suspicious that she's just trying to make money by selling products. But it sounds darn appealing that you can eat whatever you want once and a while. Plus her theory sounds pretty reasonable assuming her products work. Nevertheless, you buy the Natren's probiotics and wild oregano oil and combine them with SCD.

6.You make a decision that you'll stick with this regimen (SCD + Natren's probiotics + wild oregano oil) for a year or two and see what happens.

This is where I'm at right now. I'm doing pretty well (2BM a day, getting solid, no pain, gaining weight). Anyone have similar experiences???
Posted 10/27/2009 5:24 PM (GMT 0)
I don't think it works the same way for everyone so I think everyone's journey is different especially with it being such an individualistic disease...I hope people current and in the future will try everything and anything to feel better because if they rule out the stuff you listed above before even trying it then they'll never know if something you've tried from your list above would have worked for them.

I do the natural route (listed in my sig below) and thankfully it does help some, it's not perfect but what is. I've certainly been alot worse off than I am right now, I don't know how long it will last because the disease often has a mind of it's own and can turn on us no matter how faithfully we are sticking to our regiments, but that is the natrue of the beast afterall.

:)
Posted 10/27/2009 5:30 PM (GMT 0)
I have been doing the SCD 100% for the past 3 months and, I believe, it is nowhere near as difficult as people make it out to be. I feel for those who have made a sincere attempt at it and it didn't work, but I wonder about those individuals who quit even though it did work, or never tried it because it seemed too difficult.

I certainly fell into the second category (it's too difficult) for the first few years of my disease -- when things were not that bad -- but then after a certain amount of suffering, it was not worth it for me to continue being miserable. The pain got so bad, that I would have been willing to eat nothing but sawdust and drink water for the rest of my life if it would just make the pain go away. At that point, the SCD seemed like a no-brainer.

As for eating out at restaurants with friends, this can be done easily. I recently went to a restaurant with a friend and ordered a burger topped with cheddar cheese. I just asked the waitress to serve the burger with extra lettuce and tomato instead of bread. I was traveling in Switzerland and went out to a restaurant for swiss cheese fondue. Instead of dipping bread in the fondue, I used fresh apples and pears. A restaurant near where I live makes anchor-bar-style buffalo wings, which contain only: ceyenne, butter, salt, and chicken wings (all legal on the SCD.) I take classes part time and my school cafeteria has a salad bar. I also cook a lot more from home and eat a much healthier diet overall.

Yeah, it requires one to learn how to do a little cooking, but I would rather spend an extra hour in the kitchen each day rather than spend an extra 2 hours in the bathroom. Previously I used to fill up on: bread, pasta, pizza, and soda. Now I eat fresh: fruits, vegetables, nuts, meats, eggs, fish, and cheese. You can even make candy on the SCD. The peanut butter toffee tastes like the center of a butterfinger candy bar. Is this really such a huge sacrifice to make for regaining ones health?

All of the other things I've tried -- and I've tried almost everything under the sun -- have failed for me. That is why I have become such an advocate of the SCD.
Posted 10/27/2009 6:42 PM (GMT 0)
i think supplementing SCD with probiotics and using a broad spectrium antimicrobial like oil of oregano is a good idea as it gives you extra security in case you stray from the SCD accidentally.
Posted 10/27/2009 6:55 PM (GMT 0)
We didn't have a chance to do a lot of research or mull over things like this when my husband was diagnosed - he was diagnosed in the hospital with both crohn's and c-diff infection, and looking at surgery and getting rid of more than 1/2 his colon and dealing with 2 stomas. He was on 120 mgs of solumedrol, and vancomycin, and he saw no benefit at all (even though his c-diff was under control by that point). As a last ditch effort, the doc put him on remicade, and 2.5 weeks later, my husband was well enough to come home.

So, I don't think the natural route was even a possibility for my husband at that point, because we needed drastic improvements . . . and the natural route takes a while to work. My husband went from living a normal life to losing 45 lbs, being incredibly malnourished, developed drop foot, etc. within the course of a month.

Once he came out of the hopsital on remicade, he's made constant improvements, and got back to basically normal - though about 5 years ago when he was diagnosed with ulcerative proctitis, he gave up all sugars, caffeine and sodas. So, he just continued along the same diet, avoiding sugars, caffeine and sodas, but otherwise living normally until he came down with c-diff again.

We are taking the option of using both natural and powerful medications to let him lead a normal life. He does probiotics, reduces carb/sugars, and also is taking a number of vitamins, and now recently started bee propolis. We're not averse to the SCD, but he only wants to go that route if nothing else works to keep him in full remission. Thankfully traditional medications, and remicade are helping my husband, so for now, we're just going to stick with what works, and not rock the boat a lot.

I do wonder how my husband will do without the remicade . . . I know that they took their own sweet time diagnosing him with crohn's and putting him on steroids. I wonder if they had done a colonoscopy earlier and put him on steroids earlier, if he'd be on remicade today . . . but we've decided we're not going to change what works right now, because we're scared of remicade.

PV
Posted 10/27/2009 6:55 PM (GMT 0)
But this diet is not for everyone and I really think if it works good for you great and if others don't want to do it thats their decision. As PB4 mentioned this disease is very individual and what works for one doesn't always work for all. I personally live on a low residue diet and it works well for "me". I am able to maintain my remission with just Asacol and for that I am happy. But....if the day came that I needed a stronger med (and I doubt that day will come) I will be more than happy to go on 6mp. I am having great success with the Primadolphilus Reuteri that Pb4 recommended and recently added Vitamin D into my arsenal and am quite pleased with the results I have experienced from it. Just my humble opinion.

Hugs
Gail*Nanners*
Posted 10/27/2009 7:00 PM (GMT 0)
jp - are you still doing the remicade?
Posted 10/27/2009 7:28 PM (GMT 0)
Yes I'm still on Remicade unfortunately . . . so I don't know if the diet is actually doing anything. But I suspect that it is working because I've had steady improvement since starting and Remicade initially didn't work very well. I also notice that I still get mucus/diarrhea if I eat the wrong things. I would stop the Remicade if I didn't have to go back to school and finish like 7 years more of training (planning on becoming a gastroenterologist if I can maintain remission for that long!). I need some security and I've seen too many people get random flares while on SCD during the first 2 years, which I can't afford. My last flare took me out of school for 7 months and I had to stop my third year of medical school because of it. I now have to graduate a year later. So Remicade is an unfortunate necessity, but I'm going to play it by ear. If I'm pretty confident that I'll be ok without it, I'll stop it, but not any time soon for sure.
Posted 10/27/2009 7:39 PM (GMT 0)
Reading this thread has got me thinking.  A lot of people on here keep talking about SCD and taking herbal suppliments along with Probiotics.  My question is do these things really help or is it just the meds kicking in?

I only ask because I have tried 3 different probiotics as well as watching what I eat and none of this helps.  I don't find any one kind of food affects me except dairy (lactos intolerant).  I have found that Truvia seems to upset me but that is about it. 

Has anyone found that if they go off and then back on that there is a difference?

 

Posted 10/27/2009 8:02 PM (GMT 0)
Well I'll give you my big 2 cents here...I am not taking any RX of any kind, I'm on naturals and diet alteration along with exercise only so I can tell you from my experiance there are no meds kicking in (in my sig I mention the difference the above mentioned has made in the severity of my disease).

Also, even on the best of meds you can relaps any time, it's the nature of the disease...on any regiment you can relaps, all we can do is keep our fingers crossed that the relaps won't be as bad while using/doing certain things that make us feel better. We only have so much control no matter what we do.

BTW, I noticed major improvements the day after starting on bee propolis, I know of another crohnie that actually went into full remission using bee propolis and nothing else, everyone is different but one things for sure, the disease still has the last word, we will always be at it's mercy until a cure is found...in the mean time, as my GI says, do whatever it takes to feel better cuz that's the main goal.

:)
Posted 10/27/2009 9:28 PM (GMT 0)
You're right, my progress can be completely explained by Remicade. I have no way of telling if it's the diet or Remicade, but it's probably a combination. When I was on Asacol and eating a regular diet I had a lot of bloating which has disappeared since adopting this new diet.
Posted 10/27/2009 10:35 PM (GMT 0)
Encounter someone with IBD on no meds and says they are fine. Think they were either misdiagonsised or do not have as severe of disease as you do because they complained about single digit poops, let alone no bleeding, and no vomitting. Frustrated sigh...Diet just does not work for everyone and is dangerous for some of us.
Posted 10/27/2009 11:14 PM (GMT 0)
Yes, it is true that diet (SCD, Makers Diet) does not work for everyone. From my experience, however, it seems that -- when it does work -- it works very well. The unofficial statistic is that it works for 80-85% of Crohn's patients. For me, I know that when I go off the diet, I am living on borrowed time and am sure to flare eventually. I've found this out by trial and error for more than 10 years. My disease was described by my GI doctor (who did the endoscopy, colonoscopy, and biopsy) as a "moderate to severe" case of Crohn's. In the early days, I needed, on average, 80mg of prednisone to bring about a remission once a flare started. I could usally maintain remission with 20-40mg of pred or remicade; but *none* of the other drugs worked for me until Entocort came out in the early 2000s. Fortunately I have never had to deal with fistulas, however, I've had big problems with strictures. A GI doctor who saw me several years ago (when I was doing the SCD hard core) thought that I had been misdiagnosed and didn't actually have Crohn's. We now know that NOT to be the case as it was confirmed again by lab tests when I had my last flare up.
Posted 10/28/2009 1:05 AM (GMT 0)
By no means am I saying that I'm fine, and there are many like myself that are either allergic or non-responsive to meds, so some of us don't have any choice but to try alternative methods. But considering I'm not using any RX, thanks to the naturals and diet altering with exercising regularly, I'm not going 30+ times a day with mushy consistancy, tons of mucous and blood anymore (which I'd say is pretty severe)...that's all thanks to the naturals and the alterations with my diet and exercise...so far it's been just over 5yrs since my symptoms improved some.

:)
Posted 10/28/2009 1:56 AM (GMT 0)
pb4,
That comment was the people who tell you how absolutely severe their poop problems were at the worst flare they had in their life and it is still only a single digit.
Navy
Posted 10/28/2009 11:26 AM (GMT 0)
I have no idea if my Crohns is mild, moderate or severe. I just know I have what the medical field call complications due to having Crohns Disease. I used to get those partial obstructions quite often (2-3 times each month, lasting for 2 years, prior to my new medication),  and they gave me a lot of cramps, pain, vomiting and fevers. The vomiting was severe, often lasted for 10 hours or more. I also had diarrea every day, low grade fever almost every day, but I didn't have to go to the bathroom more than 8 - 10 times when I was really ill, so I guess my Crohns was mild. I also had abdominal pain every morning from when I woke up untill I went to bed. Increasing pain after dinner, which put me in a horisontal position for the rest of the day, pain that I would describe being the same type as when a partial obstruction is going on.

I changed my diet, avoided sugar and wheat and started using probiotics and making my own yogurt containing even more probiotics. I found out about low dose naltrexone, and have used this for some years. I still do. And I am in remission. Haven't been in remission all the time, have had small flares which have made me use prednisone for 7 - 10 days, just small doses from 10 mg and less. Low dose naltrexone is the only medication I am using. It has helped me and let me lead a life as I had prior to Crohns. I know that many people using LDN now have had much more severe Crohns than mine, many of them are combinating either SCD/or going glutenfree and LDN and/or going a more natural route including probiotics, vitamins and LDN. Many of them are also using asacol and LDN/SCD.

I am one of those that had no other options, I had to find a "something" that could help me, because I was not able to use any Crohns medication due to a different diagnose.

LDN alone is not doing it all, I have the impression that LDN is super in combination with SCD/other diets/going the natural route and with mild medications as Asacol, and it's definately not to be used with Crohns medication that is suppressing the immune system or in combination with pain medication containing narcotics. LDN is known to increase the endorphins up to 300 %. Google LDN and you'll find a lot of exciting stuff to read. Did you know that doctor Chris Steele in UK (he is Englands answer on the US's Dr. Oz) is promoting LDN at youtube now? LDN is definetely something to keep an eye on in the future, imho.

Oh, and, I forgot to say; my GI was prepearing me for a surgery, a resection, prior to LDN, more than 2 years ago. Doesn't seem to need one yet.

Post Edited (BeeSting) : 10/28/2009 5:29:45 AM (GMT-6)

Posted 10/28/2009 11:41 AM (GMT 0)
I saw someone mention lettuce/salads. I thought that was a big no-no for most crohnies. I know it is for me, but I guess it's not as common as I thought. Lettuce and spinach are at the top of my 'no' list. With those, the pain is almost immediate and the bathroom issues the next day double or triple from my 'normal.' When I try to eat healthy (all-natural, healthy foods), I get sicker. I'm at my best during a flare when I eat spaghettios. Weird, huh? It's definitely an individual disease.
Posted 10/28/2009 12:11 PM (GMT 0)
stephanie,
It is not abnormal. Veggies are normally very difficult to digest.
Posted 10/28/2009 1:50 PM (GMT 0)
stephanie,
yes, that's weird, lettuce/salads, vegetables and different kind of fruits is often a bigg no-no for most crohnies when the disease is active, but when in remission, I know it's possible to digest more of the no-nos.
I have been researching the SCD/the Makers and other diets like that, and I have found that when you're a newbie to the diets, you are supposed to avoid all these kind of triggers, but you're allowed to eat them as soon as your intestines are improved and the inflammation is low grade. This usually takes weeks. Later on you're allowed to eat even more vegetables and lettuce. Even fermented cabbage, which is known to be a hard cookie to the intestines is one of the vegetable many of the dieters use, and after being on the SCD for half a year your able to eat whatever that's legal to eat. (These diets are able to reduce the inflammation and bring us in remission). /Bee
Posted 10/29/2009 3:56 AM (GMT 0)
It was very interesting hearing of your journey. It was in many ways similar to mine.

I only have a 'mild case' of crohns, apparently, (thank god!) and there is some question, one doc, told me, whether I have UC or Crohn's, though when they first did a biopsy, they were sure it was crohn's.

I bought the SCD diet book. Was pretty sick at the time, so couldn't really judge whether it was working, but the principles seemed sound. Seemed a good diet even for a healthy person, and my BF at the time, did the diet with me, and felt better for it.

I then broke up with BF and began living alone, (no, he couldn't psychologically handle that I was so sick and not able to work...I was already used to nursing myself, so went it alone,) and after two years of Imuran side effects hell, I went off all drugs to see if I'd be ok without them, and WAS. I then went back to the SCD diet. I got rid of all processed foods from my diet. I was happy to be off all drugs, and didn't want any chemicals in my food either. Didn't have any social life due to fatigue anyway, so cooking and eating only at home was fairly easy.

It took another year or two for my immune system to recover, and for he side effects of the imuran to go away. Chronic nausea, some vomiting, migraines, fatigue, joint pain, depression. I'd get nausea pills and pain medication as required, but otherwise was remaining drug free on a pure diet and vitamins, but never having a formed bm.

I managed to stay free of flare ups, for 5 years off all drugs, and eating a pure diet, even though it took two years after getting off Imuran for the chronic nausea etc to really go away. I did have one flare due to stress, but a quick course of Pred knocked it on the head, was able to taper off quickly, and life went on.

My mother died recently, and I moved interstate to help out my family, and because no-one else was really as available as I was, being unemployed, I did most of the work. Even shifting into the nursing home with my mother, 4 days before she died of two types of cancer, to nurse her round the clock. My father needed a lot of support. I then packed up my home and moved up to the farm to be there for my father more. Of course! All this has produced a flare up, and I couldn't get off the pred. So. Back on Imuran.

I've realised I need to go back to the country town where I was living, and live the way I was, before all this started, to get my health back. After 8 years living alone, in peace, with perfect control of my diet, and being able to control my stress levels, I need that again, now.... So, am in the middle of this change now. I need to live alone for my health. I need that independence, too. Here on the farm, I'm reliant on my father or bro for every doc appt, and script refill, every errand in town, and it's too much to ask, and i don't like even asking and tired of that. I'm going. And i'm SURE hoping I can get off the Imuran quickly, once I have my own place again, and I have my stress levels way down, and my nervous system has had some time to recover. I also have many unshed tears re my mother.

I will be going back to a diet pretty much SCD, but definitely free of anything processed! The vitamins I'm taking are a calcium with D for my bones, because of the small amount of pred I'm on, but been on it for a month or more, and will be for a few more months. Magnesium. Really helps with PMT symptoms and foot cramps. Cod Liver Oil caps. 1,000 IU. Slow release 1,000 IU Vitamin C. A good B vitamin. A probiotic. Those are mainstays, but, I have Kelp as well, and others I can't think of right now.

In recent months I had a chest infection. I had a CT scan, and found I have the beginnings of Bronchiectasis. Which, is a rare complication of Crohn's. Been on lots of antibitocis for weeks and weeks for this, and will be for many weeks to come. A spiriva capsule inhaled each day as well. Probiotics are imperative because of all these antibiotics. My father has bronchiectasis, so I could have it on a genetic basis.....or, because of the Crohn's. I hate all this. I did a search of this forum last night, and no-one else seems to have crohn's with bronchiectasis.

I hate the way a 'mild case' of Crohn's has taken over my life basically. I've had it since I was 27, and am now 47. I am oh so grateful I don't have it worse! But, even a mild case takes over your life, with symptoms, drugs, side effects of drugs, chronic fatigue, you name it.

The ADD diet, my blood type diet and SCD diet for Crohn's, are almost exactly the same. This is a strong indication to me, which type of diet is the best for me!
Posted 10/29/2009 12:02 PM (GMT 0)
I am so sorry about your mother.
Posted 10/30/2009 5:38 AM (GMT 0)
Thanks for your feelings for my mothers death. Yes, it's been a biggie, and I have a lot to process still about it. I am the type of person who needs to journal out my feelings and cry them out as they come up, and I need privacy for this. I will get it one day. When I have secured another roof over my head for myself, hopefully soon. Until then I have to remain strong. Too many things to do. Thanks for your empathy.... Most sincerely.

I've only just found this forum. I really like it When I get my own place, and have my own computer set up again, I intend to come back, read, learn, and interact more. I'm so glad I stumbled across this forum! Like minded people at last! lol.
Posted 10/30/2009 10:11 PM (GMT 0)
chrisnsteph1022, I too live off of Spaghettio's when I get sick. When I am at my sickest the foods that help me the most are those I ate when I was a child, and the spaghettio's are at the top of the list. I wonder if it's partly psychological as well as physiological.
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