Living/Dealing with Crohns Disease

Well as some of you may know I have Crohns disease.

For those who do not know what it is here is a little wiki excerpt!

Crohn's disease (also known as granulomatous colitis and regional enteritis) is an inflammatory disease of the intestines that may affect any part of the gastrointestinal tract from anus to mouth, causing a wide variety of symptoms. It primarily causes abdominal pain, diarrhea (which may be bloody), vomiting, or weight loss, but may also cause complications outside of the gastrointestinal tract such as skin rashes, arthritis and inflammation of the eye.

There is no cure for this disease only treatment. Usual treatment is with steroids or anti-inflammatories. Surgery and removal of part of the intestines is also frequently done.

Well I am having my "flare-ups" today and they are really bad. I was wondering how many other BL'ers have this condition. I don't have a severe case of it so I don't need surgery. I refuse to take steroids... Prednisone made me violently ill yrs back.

I am more of a holistic medicinal person prefering to take herbal supplements rather than prescription medicines most of the time(although I don't object to them)

I currently take Acidophillis which is OTC (The bacteria commonly found in yogurt) as well as Cats Claw for my flare-ups and these do help most of the time....

Hot Coffee and stress tend to make me have bad flare-ups the most so i try to limit my coffee useage. Stress unfortunately I cant control.....

So if you have been diagnosed with crohns... What kind of medications are you on! what side affects do they produce(if any)?

Any tricks to help the flare-ups go away?

I don't have Crohn's disease but I do have ulcerative colitis, which is similar but milder as you may know. Symptoms I experience include frequent diarrhea, sometimes bloody, intestinal cramping/pain, and occasional rectal spasms.

I'm supposed to be taking asacol (mesalamine) for it, but I'm relatively non-compliant, taking it only occasionally because it gives me headaches.

I also have a medical marijuana license, which helps with some of the pain issues.

For me diet seems to have a huge effect on my symptoms. I try and avoid soda, coffee, heavily fried/fatty foods, red meat, and dairy products. This seems kinda limiting, but I find I can eat a little of any of those things infrequently, just not too much too often.

I've been wondering myself if I may have a mild form of it. The reason is because I see to have stomach cramps every time I eat spicy food or drink non-decaf coffee.

Hi there I have two friends which have Crohns Disease and have it really bad lead a good normal healthy lifestyle - one competes in Ironmen Events and is a marathon runner the other is a runner - I am doing a Diploma in Naturopathy and through this and also through my friends know that "diet" is an essential part of keeping flare ups away and also supplmentation...
L-glutamine supplementation has been known to beneift conditions such as Crohns and intestinal permeability such as food allergies.
Crohn's Disease might benefit from flax oil daily. The all-important omega-3 fatty acids appear to play an important role in Crohn's disease.
This is a book that you will also probably find very helpful!!
Controlling Crohn's Disease: The Natural Way (Paperback)
by Virginia Harper

Good on your for staying away from Predisone I hate the stuff my dad took this for his disease kinda part of a similar family to Crohns and it honestly ruined him horrible horrible drug!!

StarOceanHouse said:

I've been wondering myself if I may have a mild form of it. The reason is because I see to have stomach cramps every time I eat spicy food or drink non-decaf coffee.

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It could be a stomach ulcer?
Best to get yourself checked out with your doctor, there are medications that can help either way.

WeedMyLips said:

Hi there I have two friends which have Crohns Disease and have it really bad lead a good normal healthy lifestyle - one competes in Ironmen Events and is a marathon runner the other is a runner - I am doing a Diploma in Naturopathy and through this and also through my friends know that "diet" is an essential part of keeping flare ups away and also supplmentation...
L-glutamine supplementation has been known to beneift conditions such as Crohns and intestinal permeability such as food allergies.
Crohn's Disease might benefit from flax oil daily. The all-important omega-3 fatty acids appear to play an important role in Crohn's disease.
This is a book that you will also probably find very helpful!!
Controlling Crohn's Disease: The Natural Way (Paperback)
by Virginia Harper

Good on your for staying away from Predisone I hate the stuff my dad took this for his disease kinda part of a similar family to Crohns and it honestly ruined him horrible horrible drug!!

Click to expand...

Thanx for the info will def be looking into these suggestions!

No worries I hope it helps!!

Hey Squeaks! I don't envy you, man. Intestinal ailments are a byatch. Lived through a lifetime of those myself. I remember I used to throw up after almost every meal as a pre-teen. Only in the last couple of years have I gone off absolutely all meds, thanks 100% to a complete dietary change and the right supplementation.

I'm not a fan of the whole liver and colon flush theories, but one thing which brought a swift turnaround for me when coupled with the rest of the dietary changes were coffee enemas. Didn't see any changes until three or four solid weeks of those, then tapered off the frequency, but the change remained for the positive. Hit me up if you think it's not a far out kooky idea for you. Different strokes for different folks. The main operative principle behind that idea is it helps activate your liver, which is the main engine of your digestive system.

In addition, I cut out all white breads, all processed foods, try not to mix any breads with any meats (as they interfere with each other in digestion) and further similar themes. I used to live on antacids. I'm convinced now that they are an express ticket to a whole host of grave problems, including pancreatic cancer.

Listen, you mentioned you're more into the holistic natural approach. Have you done much research online? Places like curezone forums are great. Of course you have to wade through some therapies there (like the huda clark flushes), but for the most part, they're a great source of info on many health related topics.

StarOceanHouse, look into changing your diet. I couldn't eat spicy food before either, for a while. Cayenne tea, taken in concert with the proper balanced diet, actually heals ulcers. Read up on some of that. Apple cider vinegar (natural, nondistilled) actually helps too. More reading on that too. Prescription drugs are designed to relieve (read: mask) symptoms, without addressing the root cause. Hence why the incidence and gravity of digestive ailments has sky rocketed over the last few decades. The more we mask the symptoms (antacids sales higher and higher), the more the cause prevails and escalates.

SA said:

Hey Squeaks! I don't envy you, man. Intestinal ailments are a byatch. Lived through a lifetime of those myself. I remember I used to throw up after almost every meal as a pre-teen. Only in the last couple of years have I gone off absolutely all meds, thanks 100% to a complete dietary change and the right supplementation.

I'm not a fan of the whole liver and colon flush theories, but one thing which brought a swift turnaround for me when coupled with the rest of the dietary changes were coffee enemas. Didn't see any changes until three or four solid weeks of those, then tapered off the frequency, but the change remained for the positive. Hit me up if you think it's not a far out kooky idea for you. Different strokes for different folks. The main operative principle behind that idea is it helps activate your liver, which is the main engine of your digestive system.

In addition, I cut out all white breads, all processed foods, try not to mix any breads with any meats (as they interfere with each other in digestion) and further similar themes. I used to live on antacids. I'm convinced now that they are an express ticket to a whole host of grave problems, including pancreatic cancer.

Listen, you mentioned you're more into the holistic natural approach. Have you done much research online? Places like curezone forums are great. Of course you have to wade through some therapies there (like the huda clark flushes), but for the most part, they're a great source of info on many health related topics.

StarOceanHouse, look into changing your diet. I couldn't eat spicy food before either, for a while. Cayenne tea, taken in concert with the proper balanced diet, actually heals ulcers. Read up on some of that. Apple cider vinegar (natural, nondistilled) actually helps too. More reading on that too. Prescription drugs are designed to relieve (read: mask) symptoms, without addressing the root cause. Hence why the incidence and gravity of digestive ailments has sky rocketed over the last few decades. The more we mask the symptoms (antacids sales higher and higher), the more the cause prevails and escalates.

Click to expand...

spot on, i don't have crohn's myself but two of my friends have it. one of them has a milder form and he gets away with taking regular meds and he's said strict dietary changes akin to what SA mentioned are key to feeling better more often, and my other friend has a more severe form and relies on a dangerous IV medication, Remicade, which is known for causing sudden death in so many instances that it's now considered a common side-effect.

yeah... modern medicine is a real boon to mankind 8) and remicade is retardedly expensive too! my theory is that medication is more expensive the more lethal it is, because they can't get any money from you when you're dead so they need to adjust prices in order to extract the most money out of you before you bite the dust

ha! I like that economic theory from thujone!

I'm not at all opposed to treating symptoms alone so long as you understand that's all you're doing. I have Colitis (similar to Crohn's, but continual ulceration of the large intestine instead of "blotchy" ulceration of the small intestine) and nobody claims to understand the cause of it, so I doubt they do for Crohn's. So anybody selling a medication stating confidently that it definitely cures the cause of Colitis, whether they're GSK, Ferring, a Chinese herbal shop or a witchdoctor, is simply lying.

I'd like to make a comment on SA's last post; yes, white bread may be bad for some digestive problems, but wholemeal bread or infact any wholegrain food is bad for UC and I expect also Crohn's. The problem is that the complex carbohydrates removed from flour to whiten it take longer to digest than others (this is why they aide digestion in most people) and therefore come into contact with the ulcerated tissue. If you have UC, avoid wholegrain foods. It is preferable to avoid all wheat, but bread is so convenient that I still eat it, but rarely wholemeal.

More importantly, I would warn anybody suffering from UC that a cofee enema might cause massive problems. Just read other people's experience drinking coffee; a more direct application to the intestine could be far worse. Of course, Crohn's is higher up, in the small intestine and so this might not apply. (Please don't take this as my advice to try it).

I've been taking Mesalazine for about six months now. In the first week, it seemed to sort the problem right out and I was more or less back to normal. That lasted about a week. Since then, it has definitely improved my symptoms but they're still always present. The maximum recommended dosage is 4g a day, but I sometimes find that I need up to 6g (I don't really want to take more than that) just to be in a state so that I can leave the house.

I had a terrible experience with Prednisolone too. Once it had sorted the symptoms, I started tapering much slower than the doctor recommended, but the colitis came back worse than it was before and continued to be worse until weeks after I finished, and I was very careful with the tapering.

So--->tds

hey Squeaks. what meds are you on other than those that treat etc crohns? otc prescip etc. i had a friend with crohns pretty bad and she was taking accutane for bad acne and im sure youve seen the new class action lawsuit commercials regarding accutane and its severe effects on the bowels and colon including colon removal and death. another possibility : anyway i dont remmember the source but there was a couple and one was severely ill and wasting away with severe diarhea, the doctors prescribed all kinds of meds AND antibiotics to no avail. as most should know antibiotics kill bacteria well our gut is thriving with bacteria, at least it should be, as well as our entire body. we have a symbiotic relationship with them and they help keep us healthy. in our guts they help us digest food and other effects im sure arent even dicovered yet. anyway they went to a doctor that decided to try something unorthodox and so friggin simple i cannot believe its not commonplace. they got a sample of the bacterial colony of the healthy partner (prob a qtip up the bum) and they mixed it with i believe sterile water and administered it to the ill person in the fashion of an enema. the idea was to have the healthy persons gut bacteria colonize the ill persons gut. Anyway it worked and the person was for the first time on a path to being healthy as these bacteria colonized their new home.

I've been dealing with upper GI issues since I was in high-school, but it's only gotten much worse in the past 2yrs. Turns out it's Crohns..... fun.
Mine is more appetite/stomach related..... as in I don't get a "hungry" feeling anymore.... it's either my guts are churning & hurt when I should be hungry, or I eat and it usually comes back up sooner or later when things start burning again.
It's restricted my diet to pretty basic stuff, but I try to keep it healthy.

These are the four main things that've helped me eat & keep food down, and allowed me to kick a bin-full of stomach meds to the curb.

1. Ginger, by the handful.
I eat the crystallized raw ginger slices or chunks, make hot tea w/ honey & sometimes a half-shot of rum, and drink Stewarts Ginger Beer (or the like) by the case.

2. Cliff energy bars & gel-bloks.
Picked these up when I was a mountainbiker..... very tasty, easy to digest, natural, and cheap. They beat the hell out of Ensure and Carnation shake crap.

3. THC, or a variation thereof.
I use it in many different preparations...... but the getting-high is down on the list of reasons why I do use it. I think this and ginger, are the two main things that allow me to keep food down.
Incidently, ginger and hash-oil are very tasty together, and make a great chicken marinade.

4. Loperamide
Started using it in high-dose when kicking junk. Now a low-moderate daily shot of immodium keeps my guts from twisting & burning so much.... and from having to run to the bathroom.

Note:
standard NSAIDs are the only painkillers I take, and can tolerate. tylenol, etc are out.
and the steroids like prednisone give me bad reactions and make me really uncomfortable.... almost to the point of feeling like im junksick.

thujone said:

spot on, i don't have crohn's myself but two of my friends have it. one of them has a milder form and he gets away with taking regular meds and he's said strict dietary changes akin to what SA mentioned are key to feeling better more often, and my other friend has a more severe form and relies on a dangerous IV medication, Remicade, which is known for causing sudden death in so many instances that it's now considered a common side-effect.

yeah... modern medicine is a real boon to mankind 8) and remicade is retardedly expensive too! my theory is that medication is more expensive the more lethal it is, because they can't get any money from you when you're dead so they need to adjust prices in order to extract the most money out of you before you bite the dust

Click to expand...

I was just diagnosed with Crohn's Disease myself. I spent a week in a hospital bed because of a fistula that opened up as an abscess, intestinal fluid/blood draining right through the skin in the lower right quadrant of my abdomen, that's how my CD presented(which I have been told is a very uncommon way for Crohn's to present here in the west, more common in the third world where they don't have access to the same kind of preventative/diagnostic medicine that we do.) Anyways, 3 weeks, a few CT scans, a battery of blood tests, a central line and then PICC line, a fistulagram, a couple Remicade infusions, and one drainage tube later, everything seems to be ok, the fistula has closed itself up and the abscess opening on my skin, which was relatively small, is healing under a small piece of gauze.

As far as Remicade being potentially lethal and comparative to light chemotherapy(if there is such a thing,) it made me feel 100% better almost immediately. For me, it was a choice between surgery to remove the section of intestine that was leaking via fistula/micro-perforations, or starting a course of remicade, so I went with the less invasive option. When I was first admitted to the hospital I felt like I was dying(and I would have, had I not gotten to them in time,) the day after my first dose of Remicade was the first time that I felt well enough to get up out of bed, well enough even to go home, though I didn't as I had a central line catheter sticking out of my jugular vein and needed total-parenteral nutrition through it until the fistula closed itself off and the micro-perforations healed - which they did. For the first few days of my hospitalization, every doctor on the relatively large team treating me was certain I was going to need surgery, after the Remicade infusion, my gastroenterologist wrote "may be resolved medically" on my chart, which every other doctor disagreed with - and thankfully, it was. Also, I've been shitting normally for the first time in years.

While I agree it's a dangerous drug with a book-full of potential side-effects and dangers, it's the best we've got for an acute event like mine short of removing a section of your bowel, and when it works, it really works, given you're one of the people who respond well to it. It's just one of those diseases, right now nothing better is available so all that we can do is take the risks associated with the available options.

If anybody finds the paper on what chromeboy2k said about "beneficial infestation" or whatever you want to call it, I'd be very interested in reading it.

Ixchellian: Are you saying that you do take Ibuprofen/Aspirin, as I've avoided these since I was diagnosed; apart from taking Ibuprofen once and having a bad day afterwards, which it may and may not have caused.

Also, what I said about white and brown bread was wrong; white bread is actually less problematic because it contains less insoluble fiiber. Soluble fiber, as the name suggests, dissolves in water and therefore does not "scratch" the bowel lining as badly.

^---- correct. but only buffered or low-dose, and only after eating solids. aspirin actually works the best for me, but has a higher chance of causing nausea later. it also depends if im having a flareup; ibuprofen during, aspirin when im not.
ive also been taking bentyl, an ACE-inhibitor, which helps keep the churning down..... but has its own weird side-effects.

Hey,

Also a Crohns-affected individual. Spent a month in the hospital this summer when my bowel perforated, came home with a temporary ileostomy. So, cost and side effects of Remicade are the least of my concerns at present. Interestingly, the last time I went in to see my GI, he mentioned that he'd been doing some research on whether or not the TNF inhibitors (like Humira, which I was on prior to surgery) weaken intestinal tissue - which may have been why I blew a gasket, so to speak. Side note.

I've found that ibuprofen is hugely helpful when dealing with flare-up cramps, and for all the other obnoxious side effects of Crohns - achy joints, muscles, etc.

Aside from the occasional skin irritation, having an ileostomy isn't that bad - I can eat food again! It's just not exactly the most confidence-enhancing accessor for the single urban female...

I have Crohn's mostly small intestine, I think that's why it went misdiagnosed for a long time. I was totally clean for more than 20 years but withdrawal from prednisone, which was the first treatment that I went through, was a bear. Cannibis made prednisone withdrawal bearable and greatly reduced my need for cramp meds like Librax or methscopolamine. Limiting cabbinis use to 2-3 times a week seems critical or it stops being effective. My source ran into some problems, so I have been making do with sceletium tortuosum still seems to help the cramping and I'm almost completely off cramp meds taking them only a few times a week. I'm on Humira and still need a lot of DMARDs (Disease-Modifying Antirheumatic Drugs like hydroxychloroquine, sulfasalazine etc) without the DMARDs I have problems with joint pain, costochondritis (inflamation of the cartilage in the rib cage) and asthma-like symptoms, also my last blood test rheumatoid factor came back positive, which is something new, ANAs weren't too bad, the rest of my blood work was shockingly normal, that has never happened before. I highly recommend Saccharomyces boulardii for diarrhea it's a type of yeast and doesn't cause constipation, but I think it makes my butt smell like cheese sometimes, only notice it when I'm wearing shorts made out of thin material or in my underwear, and I have an above average sense of smell, I don't think anybody else would notice it because my wife hasn't said anything and I'm pretty sure she would. I'm looking for other alternatives, thinking that some sort of rotation would help reduce the risk of physical dependency, something like kanna, wild dagga, kratom with a day or two in between.

I find hemp oil to be better than flax oil, they contain omega-3's and omega-6's and other EFA's. Hemp hearts are pretty good, too. Don't expect any pharmacological effects, though, at least suppliers in US and Canada seem to use low THC strains and certify that.

A lot of people swear that diet makes a difference, I've tried gluten free diet and all kinds of things and the only dietary changes that seem to make any difference for me are avoiding foods with insoluble fiber, avoiding casein (lactose does not seem to matter for me) and avoiding hot spices (which is a bit depressing to be honest). Oats seem to be OK.

I've been taking a low dose of kratom (less than 1g at bedtime) and it's having another useful side-effect, I think owing to the speciogynine, which acts as a smooth muscle relaxant--rather than a painful trickle I'm getting a yellow laser beam when I urinate, seems more effective than either alfuzosin (Uroxatral) or tamsulosin (Flomax) without the problems with blood pressure that I had with either of those medications. If you don't have CD you probably do not want to know this--but if you do have CD you know these types of things become blasé--but a common complication that I have to deal with is anal fissures, which cause the pelvic floor to spasm, which irritates my prostate. Uroxatral and Flomax help somewhat, but I've had problems with too low or too high blood pressure from those meds, it tends to be too low after I take it, but too high as the dose wears off, one time I even passed out from orthostatic hypotension. Thankfully, I have not had bladder fistula yet, the burning and feeling of having to pee is quite enough.