So, does anyone try to get by without meds??

I don't seem to get along real well with many of these meds for crohn's. I'm also kind of scared of the side effects of some of the drugs. Anyone here doing things that aren't drug-based to help control the disease? Some holistic types of things or something (no experience with such topics.) Different diets? Exercise?

Anyone not have "severe" symptoms in other words or just starting out with this lovely disease?

Thanks.

-Mike

Hi Mike...we're in the "just starting with this disease" category you mentioned. My son seems to have mild CD, though I'm knocking on wood as I write that. We use many supplements and as pb4 said, have omitted all processed foods from the diet. We (my husband, daughter and I) all opted to go on The Maker's Diet when my son did back in September. The four of us have never been so healthy (knocking wood again!). No colds, no nothing thus far this winter, and that's amazing for us. Usually we've all shared at least one doozey of a cold by now with at least one family member fighting a sinus infection. Again, I am amazed.

The only drug my son takes is Asacol, an anti-inflammatory with very few side effects that's been around for 60 years. He has told me he would like to wean off that in the near future, and I'm hopeful that we can do that. He is a competitive swimmer and has been able to stick with the team through all this, so it's probably fair to say exercise plays an important roll, as well.

Of all the supplements you can take, most here would probably concur that a high-quality probiotic is numero uno.

Hope this all helps a bit!

EMom said...
Hi Mike...we're in the "just starting with this disease" category you mentioned. My son seems to have mild CD, though I'm knocking on wood as I write that. We use many supplements and as pb4 said, have omitted all processed foods from the diet. We (my husband, daughter and I) all opted to go on The Maker's Diet when my son did back in September. The four of us have never been so healthy (knocking wood again!). No colds, no nothing thus far this winter, and that's amazing for us. Usually we've all shared at least one doozey of a cold by now with at least one family member fighting a sinus infection. Again, I am amazed.

The only drug my son takes is Asacol, an anti-inflammatory with very few side effects that's been around for 60 years. He has told me he would like to wean off that in the near future, and I'm hopeful that we can do that. He is a competitive swimmer and has been able to stick with the team through all this, so it's probably fair to say exercise plays an important roll, as well.

Of all the supplements you can take, most here would probably concur that a high-quality probiotic is numero uno.

Hope this all helps a bit!

Emom.
Thanks. Yes that does help. As I mentioned above, my diet also is very non-processed foods based. I have noticed improved overall health from that alone as well. Glad to hear your family are all experiencing the same.

The Asacol is a drug I discussed with a co-worker who uses it with great results. She went to the same clinic I am going to currently, without improvement, for 5 years. She ended up going to the Mayo Clinic and they put her on Asacol and she has been doing well ever since. I have mentioned this very drug to my GI, and he seems to think it's for symptoms that are more systemic and higher up in the GI tract?? My symptoms are lower down near the anus. He seems reluctant to put me on Asacol for some reason, although he has put me on Pentasa?? Go figure. May I ask what your son's symptoms/affected are of the GI tract is? I would like to try the Asacol I think, and perhaps an antibiotic like Cipro, as I feel I have a mild infection right now. Doc is supposed to get back to me tomorrow.

My nephew has had a terrible time with his Crohn's. He has been in the hospital many times with complications. Finally, the Asacol and prednisone didn't seem to be working. He was under the impression that diet didn't matter. I convinced him otherwise. Now he takes a probiotic and fish oil daily as well as watching his diet and is feeling much better.

For the longest time (kept me in remission for a number of years), I was on no meds, but used acidophilus milk. It is at times sold as "Sweet A milk". It contains different bacteria and does not taste any different from regular milk.(It actually lasts a little longer and does taste sweeter due to the little beasties). Yogurt with "live cultures" has similar bacteria, but with milk you don't really have to do anything different or go out of your way to get the little buggers. In the milk they are happy in your colon and go down with a nice food supply.

If you do go the capsule/pill route, look for at least 2 different strains of bacteria and that they are not near expiration. Some of the better manufactures keep them in a refrigerated section. A good thing depending on your climate. (In AZ, you want to keep them in the fridge. They will also die if left in a hot car).

Hope all goes well with you...

I also have a mild case and am not currently on any meds. Since I had an allergic reaction to 6mp - still on Benadryl (2 weeks) for hives. They are almost cleared, woo!

I was on Asacol before I had a CT scan, which helped but I still had bloating, slight cramping and bleeding. He decided to change my meds because it seems my inflammation is lower in mah bum, hence the 6mp.. but he next prescribed me Pentasa. I haven't started that yet, but good to know it's meant for a mild case. Since stopping the 6mp some of my symptoms have come back, but I've made huge changes in my diet and I think it will help more. Will look into the Maker's Diet - sounds like its worked wonders for your family EMom! :D

I am grateful for this thread and for the advice given and hope to also look into alternatives to Pentasa. Now I think is the best time since I'm in between meds.

Let us know what you try miguelblanco! and much luck xxoo

Nanners said...
EMom, I too take Asacol and it works really well for me. I too also have a milder case of Crohns. But I want to tell you to keep your son on the Asacol. It is a very mild anti-inflammatory and will help to keep the inflammation down so he doesn't flare again. I didn't think it was doing much for me and quit it and wound up getting really sick. Went back on it and felt better again. I think your better safe than sorry and it is such a mild medication. Why fix it if it ain't broken??? JMHO.

Thanks, Nanners! His GI said essentially the same thing (why fix it if it aint broken?), so if he decides to wean off, we won't enter into that decision without very careful consideration.

v.scho, so glad you are having great results with LDN! I'm following it closely hoping it will be a great alternative if we need it.

I looked up the Maker's Diet. Holy smokes. There were a few sample entrees listed.

• Coconut Milk Soup
• Grilled Steak and Spring Onions
• Spicy Stuffed Peppers
• Wild Alaskan Salmon With Pecan Pesto

I'm allergic to coconut, onions, many spices, fish, and nuts!
I don't think that is the diet for me...

Two things to look out for with flagyl- avoid ALL alcohol and watch out for numbness or tingling, especially in your hands and feet.  Alcohol combined with flagyl will make you very ill.  And flagyl can cause neuropathy.

The number of doses depends on the brand of probiotic.  The Nature's Way version that pb4 recommends is 1 capsule a day.  I bought a 90 day supply for about $25.  I traveled at Christmas time, and didn't want to deal with refrigeration, so I bought a shelf-stable chewable for about $10.  But you're supposed to take 3 of them a day.  Not really any cheaper in the long run, and probably less effective because I had to remember to take them more frequently.  Which I didn't.

The active constituents of chamomile are mainly volatile oil (bisabolol, bisabolol oxides A and B, chamazulene or azulenesse), quiterpene lactones, glycosides, hydroxycoumarins, flavonoids (apigenin, luteolin, patuletin, and quercetin), coumarins (herniarin and umbelliferone), terpenoids, and mucilages. These active ingredients contribute to chamomile's anti-inflammatory, antispasmodic, and smooth-muscle relaxing action, particularly in the gastrointestinal tract. Bisabolol has significant antispasmodic and anti-inflammatory activity. Chamazulene has strong anti-inflammatory activity. It has been shown to block the cyclooxygenase enzyme in the synthesis of prostaglandins. Chamazulene is an artifactual component formed during heating of teas and extracts. Chamazulene and bisabolol directly reduce inflammation in tissues with which they come into contact, stimulate the formation of granulation tissue. Chamazulene is present in German chamomile, but only traces occur in Roman chamomile. The dicyclic ether in the volatile oil relaxes the smooth muscle, regulating peristalsis, while the carminative volatile oil reduces flatulence and irritation of the gut wall. The polysaccharides have an immunostimulant action which activates macrophages and B-lymphocytes. Nonvolatile constituents, including flavones (apigenin, luteolin, patuletin, and quercetin) are also antispasmodic. The coumarins herniarin and umbelliferone may quell inflammation and quiet smooth muscle spasms.

Medicinal uses and health benefits of chamomile

--------------------------------------------------------------------------------

Chamomile has been used to treat a wide range of conditions and diseases when used internally or externally. This bittersweet herb acts medicinally as a tonic, anodyne, antispasmodic, anti-inflammatory, antibacterial, anti-allergenic, and sedative. Chamomile tea can be used to treat digestive disturbances, gastrointestinal spasms, inflammatory disease of the gastrointestinal
tract, and to treat coughs and colds, fevers and bronchitis. Chamomile contains bitter constituents that stimulate appetite and digestive secretions that help reduce flatulence. Chamomile's mildly sedating and muscle-relaxing effects can help those who suffer from insomnia to fall asleep more easily. Chamomile is best known as a muscle relaxant and antispasmodic. Chamomile helps to relieve nausea, heartburn, and stress-related flatulence. It may also be useful in the treatment of diverticular disorders and inflammatory bowel conditions such as Crohn's disease.


:)

    My answer to your question…….”so, does anyone try to get by without meds” …….is YES.   I gave up all medication in 2005 – against the advice of my doctor.   The medication was not curing my UC, it was just controlling it. The doctor told me I would need to take it everyday for the rest of my life.   The main reason I gave up medication was because it made me feel terrible most of the time. I had a huge weight gain of 30KGS, I was irritable all the time, I developed an inner rage, I sometimes had the urge to stab my husband because of the inner rages, I was very short tempered, I had headaches, I was depressed (I felt suciduial after the doctor told me I would be on drugs for life) I was felt sad, teary, depressed, I developed a moon shape face and the steroids caused a rather fetching moustache to grow on my upper lip.   In the end, I could not see the point of taking a certain drug to “heal” UC but at the same time suffer from serious side-effects in the form of other disease brought on by that that drug.   It’s like robbing Peter to pay Paul!   I had some success keeping the UC under control using solely vitamins and minerals but I stopped that because it was quite an expensive process.   By August 2007, I was extremely sick again but still resisting a return to the drugs.   Since September 2007, I have been following David Klein’s raw vegan diet and finally feel that I am getting somewhere. I believe I can totally cure myself through this diet and the odd vitamin.   Fingers crossed.

You're welcome Karen!!!!


:)

since fiber came up earlier in this post I had to add a plug--my new naturopath put me on a fiber suppliment called Ultra Fiber Plus and it is great stuff. tastes good, no fake sweeteners, several different fibers. if a bit of it doesn't dissolve it is not gross, but actually kinda yummy!