30 yrs old 19yrs with painful crohns. need natural remedy advice

[toddadamm]

Hello all, this is Todd

I have been sufferring since age 11 with crohns and am now 30. the last year and a half has been an excruciating nightmare and I need help. Traditional medicine isnt cutting it and I am extremely interested in the naturopathic approach.
I am taking 500 mg fish oil daily, cheap chewable acidophilis tabs and my normal medical regimen ( immuran). since i had started the fish oil and probiotics, I have been symptom free for roughly 40 days....til yesterday. the inflammation is back and i had to leave work sick...yet again.

please anyone out there i cant go on like this. i know it will take time to get symptom free i just dont know what to take. i see a bazillion things on the web claiming to control crohns whats the best probiotics? does psyllium husk work? what can i do to be myself again?

the pain is excruciating.

 

[jed]

hey todd, welcome to the forums.

i really have never looked into natural remedies yet, only been diagnosed for about 18months and at the moment methotrexate is doing the job for me (with a lil side help from pred)

good luck in your quest for natural meds, let me know if you find any that work really well, would happily give them a try.

one thing i found for me tho, is that fish oil was no good. differs for every person tho.

best wishes.

 

[Guest]

hi Todd, welcome to the forum.

i am pretty pro-natural medications, so i totally support you going down this path. i would say, however, that there are so many products and promotors of products which are a total, and expensive, waste of space - plus some can actually cause more problems with your health & digestive system.

if it is at all possible, i would suggest at least one consultation with a registered alternative medicine advisor - as far as i know, this would be a private consultation so you'd have to pay yourself, but it would be well worth it, just to know you're not blindly purchasing & ingesting things which could be totally wrong for you.

good luck, and please let us know how you get on!

 

[Colt]

Herbs are only mildly effective at best. Medications and 'natural remedies' (the ones that actually work) really only differ in that medications are refined and concentrated, and sometimes slightly altered to make them more effective or reduce side-effects (don't think that herbs and such don't cause side-effects). Aspirin for example comes from willow bark. It's simply refined to remove the bad parts and give you just the good stuff.

The thing you'll need to come to terms with eventually is that crohn's disease is not curable. I hate to be a downer but you're going to be sick to some degree no matter what you do.

Depending on our current level of severity some of us set our goal at being able to function in our daily lives and we're happy if we meet that goal. Others set their goal at staying off the toilet for at least 50% of their day and they're happy if they meet that goal. Still others set their goal at not dieing and they're thankful for every additional day that they meet their goal.

Figure out a realistic goal (like reducing your average pain level from 8 to 4) and go for that. You'll find yourself a lot less miserable if you don't treat the disease in an 'all or nothing' fashion.

 

[Aenea01]

Fwiw I'll give you what worked this past year for me to pull me out of a nasty flare. Take it with your grain of salt, maybe some of it will be of help for you.

I got to the point where it was very Pavlovian for me to eat. Food = pain So I couldn't find anything that I could eat that didn't hurt, my intestines were so inflamed and ulcerated.. I threw my hands in the air and said "F* it I swear off food, I give up" and that may sound funny but that's what I did.

I decided to give my intestines a break from digesting, it was just too much pain to deal with, yet I was preeeetty hungry. I went on an all liquid diet, starting with clear liquids for a few weeks then moving on to soups (like when you come out of a surgery but longer). Then I started adding in soft fruits and steamed veggies on occasion. No bread, no processed food period.

After months of that I've moved up to a minimalist amount of low-residue diet, I call it eating like a bear. Fruit (lots of berries), apples for soft fiber, no acidic fruits btw - steamed veggies, grilled meat occasionally. It's pretty yummy and I'm finding enough to eat after poking around the stores a bit.

No wheat, no processed food (means nothing out of a box or can). I'm finally back to a point where I don't hurt, I don't puke every morning, I can process food if I don't eat too much at one time - without anything more than discomfort , and my flare symptoms have subsided. My intestines are actually functioning and I don't feel ulcerated, and this is big for me - I've learned my lesson.

I'm staying with this diet. Low stress and a good diet has me in or heading to remission and I'll be damned if I go back the other way on purpose. Like many, I need to work and I've got a family etc.... I've got to find a way to live with this disease and I refuse to let it stop me Yeah yeah I know, easy enough for me to say, I'm not on the floor today praying to the Porcelain God, but I swear to you it can and will get better.

 

[Aenea01]

Psyllium btw is a wheat fiber. I'm not here to preach against wheat, many people tolerate it just fine. But it is a rougher form of fiber and it's encouraged for people who don't get enough in their diet.

 

[toddadamm]

aenea i am super duper interested in this diet management system you have come up with... as i am now, seeds like berry seeds pass through and fruit skin is too rough. is rice legit for you? I am not looking for an entirely naturopathic remission, i still will take my immuran. i started with fish oil 600 mg a day 40 days ago and didnt have any flare till 2 days ago. the first day was 4 out of 10 on pain, yesterday was 7. the flare is gone for now. im just so fed up with traditional medicine that i think it needs a helper. what about probiotics? im on dairy free chewy tabs of acidophilis, bifidus. since i changed my habits of smoking, eating garbage and deciding to exercise more, i even made solid doo. that is epic for me.
thatnk you all for the tips i will definitely be bugging you for more help along the way and please ask me anything you want i want to help u guys too even though we dont know eachother. we are all heroes

 

[toddadamm]

heres what i gave up: fatty food, caffeine, cigarretes, booze, roughage like veggies, etc. i have become obsessed with bananas (the most underrated flavor ever. started running 3 miles at least 3 times a week. i skateboard religiously and have been since 13. drinking lots of green tea. today i feel much better. i stopped eating when the flare occurred and was fine today. to colt: i think i have set and achieved snippets of my good health remission goal because the last year and a half id have a flare at least once a week, i had an abcess we had to take care of, and went from 80 mg of pred, to 0. and i still had that 40 day period of endless energy and felt great. I have smoked for over 10 years and now is the time to end it for good. i hate cigarrettes and always have but my dr never told me if i quit my symptoms would improve (im an idiot for not figuring this out on my own, but now i know. i believe that im just still too much in the early phase of getting my health together. my realistic goal is to diminish the frequency of my flares. so far so good? ~Todd

 

[Aenea01]

Thanks for the nice note

Don't misunderstand me too, I'm a fan of modern medicine - I was on Immuran for a while and will take it again if/when my doc says I need it. But for now Pentasa (my 'take all the time" medicine) isn't doing much for me and like I said at some point food is just too freekin painful to keep playing around with /shrug what are you gonna do, you have to keep eating right?

Rice seems to be a favorite of many Crohn's patients. My only thoughts on this is that bleached white rice has little nutritional value yanno

I had the same thoughts, though I smoke the 420 and haven't given that up. I was tired of hurting all the time and not having control over my body so I decided to take some of it back. Excercise has helped a lot more than I thought it would, eating well - I mean with the liquids and the small amounts of real food - things have changed more than I thought they could. I don't feel 'sick' these days, or out of control, although I can tell my system isn't perfect yet. Right after I eat I have to sit down for a few, and if I eat too much it's really uncomfortable, so listening to your body is really big.

It's all the things you ever heard enforced isn't it? Eat right, eat in moderation, excercise, stop stressing out, don't internalize, get outside of yourself etc.... heheh I jokingingly tell my friends that it's Mother Nature's way of enforcing all those things my mother used to tell me I wouldn't listen, kept driving in the commute, kept working all hours, kept eating the crap - and look where it put me. I stop doing all of that shit.... boom I can almost function normally if I"m careful. Wierd /shrug but funny how it all works out.

Here's me rambling on at night. If you have any other thoughts do feel free to add them. I'd never wish this pain on my worst enemy and I feel, I really do for anyone who is in current pain with this shit.

 

[Aenea01]

Bananas and peaches make great smoothies

Resist the urge to throw all the protein or fiber crap in there, you probably don't need it this week (but probiotics rock). I do the liquid till my intestines don't feel fragile anymore then do the soft fruit soft food thing, no need to start out with seeds on an inflamed colon.

Remember also that if you do take the liquids for a while, you will need to keep your calories up. It's a wonderful excuse for a milkshake

 

[pb4]

Hi Todd

If you want to try the natural approach, here are the things I've found some success with;

probiotics
bee propolis
omegas 3-6-9
fibre supplements
vitamins A and C-calcium ascorbate
chamomile tea with honey
regular exercise
altering diet, no more junk foods, fast-foods, processed foods, caffiene, animal fats as these are all known to exacerbate symptoms, including msg's, refined sugars, sugar substitutes, artificial sweetners.

I'm either allergic or non-responsive to traditional oral RX so I had no choice but to put my huge skeptisism aside and go this route with the naturals and altering my diet...I have still not reached full remission in doing so (likely because of complications with my perianal crohn's skin tags) but I've gone from going 30+ times/day down to 5 and with no bleeding or lower back pain and I now have fully formed stools.

Keeping in mind, what works for some doesn't work for all and often it's a combination of things rather than just taking one thing that aids...and starting one thing at a time is best so you know what (if anything) it's aiding with.

I started out with taking the bee propolis first (aprox 5ish yrs ago now), with great improvements from that alone, within the next day my 30+daily bm's cut into half the amount, the bleeding stopped and the lower back pain too, it also cut back some of my mucus...then I added the fibre supplements daily as strongly suggested by my GI, that pretty much bulked my stools up, helped completely eliminate the mucus and cut my daily bm's to about 10/day from there, then I added the probiotics and the rest I mentioned above which brought me to where I am now at about 5/day, formed, no bleeding, no excessl mucus, no pain, but remember, diet and exercise has also played a huge role as well (as I mentioned above)...I've had CD for 17 yrs now and about 5ish yrs ago my GI also suspects that I have IBS as well, he also tested me for lactose intolerance which was also confirmed and severely to boot, thank goodness the primadophilus reuteri probiotic that I take aids with that, I no longer have to rely on lactaid products...and just so you know re; the bee propolis, don't take it if you're allergic to bees, but my GI encourages me to continue with it daily and indefinitely because it has helped symptoms so much and he assured me it's 100% non-toxic, so no worries taking it daily and indefinitely, he also said even if it didn't help my symptoms (which it does) that it's still an excellent source of dietary supplementation for IBDers whom don't get all the nutrients via food alone.

Good luck and feel better soon...I know what it's like since in my entire 17 yrs I've never once been in full remission (I do have perianal crohn's skin tag compications which I've been told by a colon/rectom surgeon that I likely never would reach full remission because of). But 5/day beats 30+/day with awful pain, bleeding and consistancy anywhere from D to mush to semi-formed.

 

[fenway1971]

This thread interests me a lot. I'm trying to escape from my worst flare which began in July. On Prednisone 3 weeks now, from 40mg to 30mg. Got kidney stones and finally said ENOUGH. Time to see a nutritionist. Here's what she advised:

1. Load up on Vitamins A and C.
2. Take Magnesium supplement - help balance my acidic diet. I also suffer from GERD.
3. Take Bromelain supplement. Supposedly is an anti-inflammatory agent.
4. Probiotic yogurt every day. I'm taking vanilla Activia.
5. Increase potassium intake. I eat at least one banana a day.
6. Avoid corn-based and wheat-based fibers.
7. Up my fruit intake. I seem to be ok in veggie department but don't eat enough apples or berries.
8. Add more fish. Planning to add fish oil supplement.

I'm just starting this routine.

Hardest part for me is accepting that I can't/shouldn't eat certain foods even though I adore them (coffee, spicy foods, tomato sauce).

The bee stuff sounds interesting. I might check into that depending on how my diet goes.

 

[Aenea01]

pb4 I think you are my long lost twin or something. I've got Crohns and IBS also and suffer horribly from perianal ulcers (ok so it's not skin tags but close).

Hola Miho

 

[toddadamm]

i love this

I am the biggest moron for not reaching out to this forum a long time ago. im done being sick as often as i am...pb4 holy mother of god your crohns sounds like a bastard. and i am so glad for you in how far you have come. 3-5 times a day for bms is my norm... i think though i keep getting obstructions. i never bleed, unless i digest my own blood (so creepy) before it makes it out, but there are no signs of that, just bloating and i can see the left side of my abdomen gets hot and vieny and distended. it feels like i get frequent obstructions, but i can also go for periods of time eating "normally" and not have an obstruction. i rode my bike to the grocery store at midnight and loaded up on decaf teas 13 bananas, delicata and sweet dumpling squashes and oregon blackberry honey, straigh from the bees, not in a bottle..
Aenea after what u told me about processed food, i look down the aisles there and everything becomes ruled out. my whole train of thought is different now, and i thought i had already changed it enough. I feel inflammation today, but am working. Im a mechanic and i hope this environment isnt affecting me as well. [chemicals/oil] i hate this industry anyway and am getting out soon to pursue art.

the last cat scan i had revealed 4 narrowed sections of my small intestine. this is where i get hammered by crohns. im on liquids today, but feel the inflammation still im not doubled over. this is the 3rd day of the flare. i also choke down ganja, but i cut that way down as well, my head became cloudy, and im sure the smoke doesnt help, but in oregon, we have the finest and im saving for a vaporizer....
what sucks is my dr. he tells me eat anything, including fast food god forbid. he wont suggest any natural aid or supplements. he just wants to cut me apart. what a jackass. im getting a tb test to see if i can be down with remicade on the 14th. im not looking at all to be medication free, i have heard great things about remicade and horrible things as well [anaephelactic shock?] doesnt sound fun... any comments from you guys about remicade??
its so amazing to have ppl to talk to. i went to my 1st crohns support group meeting with ccfa in portland recently. 6 ppl showed and we basically just bitched about things and it ended up being the farthest thing from support ever. so stoked i found this forum so guys get used to my long winded typing. and thanks again!

 

[toddadamm]

fenway

were in the same boat here, just beginning to realize that we dont have to be as sick as we are. it will be iteresting to share our progress. ur lucky u can eat apples, i cant digest the skin, i basically chew my food 90bazillion times before i swallow. im not even sure thats necessary, im sure it would be charming on a first dinner date.

what are your thoughts on oatmeal ppl? is that wheat?

 

[D Bergy]

I used Fish or Krill oil at three times the normal dose along with 1000 mg Turmeric and Ginger capsules, twice a day to help control my symptoms.

It was not a perfect solution, but it did bring noticable results.

Now I use a chemical bacteriacide occasionally, and LDN along with smaller doses of the above supplements.

It will take experimentation with dosages to get the desired results. Also check for drug interactions. Most anti-inflammatory herbs and such have a slight blood thinning effect.

Dan

 

[pb4]

This is a weird disease for sure eh...we can vary so much from one another yet at the same time almost totally relate to eachother as well...

The perianal crohn's skin tags I have is actually where my disease started for me, it was about a yr and a half after having my first child that they got totally out of control, they actually appeard in my early teens when on very rare occassions I would get a tiny bit constipated (nothing serious) and at that time they would appear and then disappear completely on their own...but after soon after having my first child they would not go away and although I was told over the yrs they were just hemheroides it was far from it...they got their worst when my baby at the time was about a yr and a half and I never felt pain like I did, I had to fill the tub with water to have bowel movements (what a mess that was) but they were pretty much still formed, they just started happening more frequently, I was always a one poop a day kinda girl with no issues for the most part...Anyways when it got to the point where I was having to "go" in the tub my Dr. sent me in for an emergency hemheroidectomy, I even told them I was starting to have more frequent daily BM's but because it wasn't D, they sluffed it off as not being any conern or relation to the "hemmies", well, shortly after the surgey (they were banded, not cut off) they didn't heal and then internally my CD really exploded, my CD was not just affecting the outside of my anus with the perianal crohn's skin tags, but also my rectom, colon and small intestines....I was quickly DX with having CD after that and the GI I had at the time sent me to a colon and rectom surgeon to see what if anything could be done about my misDX anal tags, that surgeon was the one that told me nothing could be done and it was a shame they were treated as hemmies and banded because now they would never shrink up (come out of a flare) and 17 yrs later he was right, they've never gone away like they used to and infact they have remained large and hard (flaring) and I've even developed a few new ones...my poor butt hole is in awful shape, but I'll still take 5/day over 30+ with severe D and blood any day after what this stupid disease has put me through...I'm just thankful that I'm not a stricturing crohnie or a fistulizing crohnie....funny there can still be things to be thankful for eh.

It's actually more common than most realize to become inflicted with IBS when you already have IBD, my GI explained to me that typically the longer a patient flares or the more frequently they flare the higher the risk that you'll develop an irritable bowel as well.

Lactose intolerance issues are also common among IBDers, and I'm glad I got tested for that because my lactose issues were pretty severe as well, since getting that under control (using a probiotic called primadophilus reuteri which specifically aids with lactose issues, high cholesterol and for women vaginal health) it has made my IBS and CD much better to tolerate, it's very easy for people with IBD to not even realize they also have lactose intolerance issues because they symptoms are easily masked by having IBD since the symptoms are so similar.

 

[EHarold]

I swear this is a scene from Fight Club......

Nice to see another Oregonian Todd. I just found this place too.. I'm 28 and am pretty sure that this has been an issue since about 8 or 9.. back then I was just giving the generic IBS and sent on my way..

Then in the past few years my health started declining, but I was too busy with my job to really pay any attention. Then I lost my job and the health insurance that went along and kind of just floated along thinking that I had a hernia and not anything else....

Thankfully my girlfriend made enough phone calls and an awesome program through Peace Health is helping me get all the attention I need... I've got to see quite a few doctors in the past few weeks and am going to go in for a colonoscopy /upper endoscopy to make sure it is Chrohns..Given my predisposition (thanks to bad genes in my family) all signs point there along with the usual symptoms, but the doctor wants to make double sure..

Since you're in Oregon have you made sure to get yourself protected at least on the state level with a Medical Marijuana card?

 

[toddadamm]

i have looked into the green card. its 300 bucks and i cant afford it yet. it is easily obtainable though especially with a person of my medical history. i dont want to smoke it id rather eat recipes with it or use a vaporizer. smoke is bad no matter where it comes from.
btw. its autumn and squash rules.

 

[Mazen]

I have been trying the following regimen for a week or so, after I got my pain away with a 10 day course of Cipro and Flagyl:

- 250 mg Bee Propolis early morning on empty stomach (pb4: is this the right way to take it? what is the dose you are taking? what brand?)

- 500 mg Turmeric

- 3 Omega 3 fish oil capsules (300 mg EPA, 200 mg DHA each)

- 1 Cod Liver Oil Capsule

- a Men's multivitamin

- My regular meds of 3g Pentasa and 50 mg Imuran

Don't know if they are doing anything, but let's see......

 

[D Bergy]

The experience of Mazen and myself indicates bacteria involved with Crohn's symptoms. The antibiotics do not have any other effect that I am aware of other than killing bacteria. The product I used also is a bacteriacide and eliminated my sensation in my Terminal Ilium area.

It may be a good idea to replace the void left by the eliminated bacteria with good bacteria from a probiotic.

I think examples like this point to a connection between bacteria and Crohn's. it may still be debatable which bacteria, but at least it gives us a fairly big clue.

Fish Oil, Turmeric, Ginger also inhibit the growth of some bacteria as well as Coconut Oil.

Dan

 

[toddadamm]

mazen, i have been on fish oil for over a month. i started it when i had 4 sections of my small intestine narrowed with inflammation. the pain was....well u know how terrible it is. and now i feel like a new person. i had a flare 3 days ago and it has since subsided. i am also taking aeneas advice on diet but not as hardcore as she does it. i eat tons of bananas, squashes and brown rice. ive given up on wheat as a test to see if that is a factor as well. my dr want remicade for me but i might pass if thingds keep improving as they have been. im still on immuran and dont plan on cutting out my meds, i just want to battle this SOB from every angle possible. it cost me a 3 year relationship.

 

[pb4]

I have been trying the following regimen for a week or so, after I got my pain away with a 10 day course of Cipro and Flagyl:

- 250 mg Bee Propolis early morning on empty stomach (pb4: is this the right way to take it? what is the dose you are taking? what brand?)

- 500 mg Turmeric

- 3 Omega 3 fish oil capsules (300 mg EPA, 200 mg DHA each)

- 1 Cod Liver Oil Capsule

- a Men's multivitamin

- My regular meds of 3g Pentasa and 50 mg Imuran

Don't know if they are doing anything, but let's see......

Hey Mazen

I take 500mg caps that I buy online from puritans pride (very well priced and always good sales), I don't think it matters if you take it on an empty stomach or not, I never noticed any difference from doing it either way, generally I take one with supper and one at bedtime of the 500mg caps.

Good luck

 

[Creepy Lurker]

I swear this is a scene from Fight Club......

Rule #1: You Don't talk about Crohn's Forum...