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

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miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 12/31/2007 12:46 PM (GMT -7)   
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

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 12/31/2007 12:50 PM (GMT -7)   
I happen to be either allergic or non-responsive to traditional oral RX so I had no choice but to go the natural route, modify my diet and exercise regularly...

I use:

bee propolis
probiotics
stool bulker (strongly suggested by my GI)
omegas 3-6-9
vitamins b12, A and C-calcium ascorbate
chamomile tea

every day

I also avoid processed foods (especially table sugar and artificial sweetners, ect) fast-foods, animal fats, caffeine and exercise regularly...it's amazing with all of the above combined for me how much healthier I am overall and not just better CD wise...I also drink nothing but water and chamomile tea (one/day).

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 12/31/2007 3:20 PM (GMT -7)   
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

Grateful for everyone's help here!

Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium and a good multivitamin.

Started The Maker's Diet in early September.


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/1/2008 11:46 AM (GMT -7)   
pb4 said...
I happen to be either allergic or non-responsive to traditional oral RX so I had no choice but to go the natural route, modify my diet and exercise regularly...

I use:

bee propolis
probiotics
stool bulker (strongly suggested by my GI)
omegas 3-6-9
vitamins b12, A and C-calcium ascorbate
chamomile tea

every day

I also avoid processed foods (especially table sugar and artificial sweetners, ect) fast-foods, animal fats, caffeine and exercise regularly...it's amazing with all of the above combined for me how much healthier I am overall and not just better CD wise...I also drink nothing but water and chamomile tea (one/day).

:)

Thanks for your response. Being I was diagnosed with Celiac Disease about 6 years ago, my diet is already ridiculously healthy. No fast food (or eating out for that matter) basically, well, ever. Too many food allergies to eat out. What are these probiotics? My understanding is they are "healthy bacteria;" is that correct? My GI has not said boo about them. I wonder why? What form are they in? Is it a pill, or a type of yogurt or something?

I used to take a multi-vitamin. I tried the 'ol "process of elimination" thinking something in the vitamin was causing my crohn's. I don't think that was the case, of course, so I may start one again. I was taking one that was gluten free. Nature Made I want to say?

Stool "Bulker?" Is that like citricil or one of those? I tried one that was gluten free/ artificial sweetener free, "Benefiber" I think it was called. Didn't seem to do much but to give me gas.

I drink mostly water, some OJ, a little milk on cereal. Is coffee a really bad thing to drink? I don't have the big D, and just go once per day, so I didn't think it was doing any harm to have some coffee. What's the consensus on coffee?

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/1/2008 11:55 AM (GMT -7)   
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.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/1/2008 12:03 PM (GMT -7)   
Yes, probiotics is good bacteria and not all docs are on board unfortunately with just how beneficial they can be for us IBDers, but they've really helped me tons...many people eat yogurt daily and take a probiotic in either cap or powder form...definitely check into it...I myself use one called primadophilus reuteri made by natures way and it has many benefits, it aids with lactose intolerance, high cholesterol and vaginal health, even if you don't have any of the above issues it's still safe and great to take...it also has guaranteed intestinal release, only one/day is needed and it's very affordable.

Sticking with fibre supplements is key, eventually the gas/bloating from it will subside, but if you're in a "good" place with your crohns and celiacs then don't worry about fibre supplements...I do highly recommend probiotics daily for everyone though, even in remission one should continue with it daily.

If you're only going once/day with no D sounds like you're in a great remission, just keep an eye on things and if they take a turn for the worse, ditch the caffeine and add the fibre supplements.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 1/1/2008 3:38 PM (GMT -7)   
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.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/1/2008 6:24 PM (GMT -7)   
miguelblanco said...
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.


Well, hopefully someone will jump in here with more knowledge than me, but it's my understanding that Pentasa and Asacol are very, very similar, and which one you're prescribed depends on where your affected area is. Your doctor may have you on the correct one for you. My son's affected area is the ileum and the rectum, though. He currently seems to be without symptoms, but at his worst he was having D about 5-6 times a day, mild abdominal pain and mild rectal bleeding. He had been anemic for about 1 1/2 years prior to his diagnosis, so either he was bleeding a bit and didn't know it, or the inflammation was interfering w/iron uptake. Or both.

It really sounds like you're on the right road with your diet! I believe it will make a big difference in the long run. I noticed you said you drink some milk, though. Consider drinking the ultra-pasteurized only. We have stopped milk/dairy and eat beef only well-done due to concerns about MAP.

When you said you think you may have an infection right now, do you mean in the GI tract? You might ask a separate question here about that before you jump to a big gun antibiotic like Cipro. It seems I've read something about it previously, just can't remember what. If you do end up on an antibiotic, just remember the probiotics are then even more imperative. Take them 2-3 hours after your antibiotic to avoid too many of the "good guys" that you're trying to promote in your intestines being killed off by the antibiotic.
EMom

Grateful for everyone's help here!

Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium and a good multivitamin.

Started The Maker's Diet in early September.


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/1/2008 7:06 PM (GMT -7)   
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...

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/2/2008 7:29 AM (GMT -7)   
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.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


heavly
Regular Member


Date Joined Nov 2007
Total Posts : 83
   Posted 1/2/2008 8:47 AM (GMT -7)   
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
24 yrs - female : diagnosed with Crohn's 11/29/07

"i believe - you can keep going long after you can't"


vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 1/2/2008 9:15 AM (GMT -7)   
I too am a BIG believer in probiotics.  I use a six strain powder form I get from customprobiotics.com...great stuff, but be sure to keep it frozen.  I also do acupuncture regularly.  Really helps.  The main thing tho is LDN (low dose naltrexone).  I take 4mg after 9pm each night.  It boosts your immune system by tripling the endorphin production.  It's a wonder drug with no side effects.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/2/2008 11:39 AM (GMT -7)   
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.
EMom

Grateful for everyone's help here!

Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium and a good multivitamin.

Started The Maker's Diet in early September.


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/2/2008 1:55 PM (GMT -7)   
Well, just got back from lunch, and spoke with the nurse practitioner at the clinic before I went to eat. They agree that it sounds like I may have a fistula which is causing this drainage. They are prescribing Flagyl for me for two weeks. Given I have had the best luck recently when I was prescribed Amoxicilyn for a mouth flare up I had, I am optimistic that it may work as needed. When on Amoxicilyn, this ***** drainage all but stopped. It was wonderful. Hopefully Flagyl does the trick and has a lasting effect.

Anyone taken Flagyl? Anything to look out for? Allergic reactions, things of that nature?

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/2/2008 2:00 PM (GMT -7)   
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! nono
I don't think that is the diet for me... tongue

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/2/2008 2:21 PM (GMT -7)   
Wow. I am learning a lot from everyone. Thanks so much!

I am very interested in the probiotics.

Question: Do the probiotics CAUSE diarrhea at all? The last thing I want to do is make myself go more, being that I am only having to go once per day, and not that long ago I was having to go 5-6 times a day.

I've looked at the Nature's Way site and the Custom Probiotics sites, thanks much.

Any others I can look into? Are they all fairly expensive? What's typical for a month's supply? Do you take them once per day?

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 1/2/2008 3:34 PM (GMT -7)   
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.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/2/2008 3:39 PM (GMT -7)   

pb4, what does chamomile tea do? I love that tea and did not know it would help CD.

 

v.scho, I never thought to consider acupuncture. I probably should try ti sometime. I have always wondered what it was all about.

 

I know I should be taking some other natural remedies as well as my meds but I just have not done the research to which ones are the best.

 

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/2/2008 3:54 PM (GMT -7)   
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 bum is broken....there's a big crack down the middle of it!  LOL  :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/2/2008 3:57 PM (GMT -7)   
miguelblanco,

Probiotics should in no ways cause D, they are simply good bacteria...for some it can cause gas which is usually because it's killing off alot of the bad bacteria (bacteria over-growth).

Google the things I listed above that I take, bee propolis, ect and you'll learn more.

I spend way less money a yr with all that I take compared to what most people spend in a month on oral RX, not saying people should stop taking their oral meds that are helping them, but the things I take don't interfere with the oral RX used for IBD, my GI mentioned this to me as I was at one point still going on and off pred, but no more since it has lost it's affectivness for me.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


MoonShadow
Regular Member


Date Joined Dec 2007
Total Posts : 52
   Posted 1/2/2008 4:35 PM (GMT -7)   

  

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.


MoonShadow.

Australia.

Female 37.

Sick since 1998 – finally diagnosed 2003.

No drugs (last drugs were taken in 2005).

Healing myself thorough diet & natural methods.

Using plant derived MultiGest Enzymes capsules as part of diet.

 

Feeling fantastic!


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/2/2008 5:12 PM (GMT -7)   

wow, thanks for all that info pb4! I will definately keep drinking my tea. I love chamomile tea and now I know it can help my CD.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/2/2008 5:46 PM (GMT -7)   
You're welcome Karen!!!!


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 1/2/2008 8:06 PM (GMT -7)   
i've been med free for the past 2 months. no symptoms. i feel freaking fantastic. i was on meds for 14 years and always questioned their efficacy. i was everything from prednisone to 6-mp to remicade and everything in between basically. the drugs just masked symptoms at best imho as i still wound up getting surgery. diet totally changed my life. i have been doing the maker's diet for 1.5 years now and a few months ago began combining it with parts of the specific carbohydrate diet.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 1/2/2008 8:46 PM (GMT -7)   
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!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil and vicidin as needed.

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