daughter wants to quit meds !Anyone out there that has beat Crohn's naturally?

Hello.  For those of you who don't rememeber me, I am Jennifer and my daughter, Marie, is 15, recently dx withi Crohn's (Moderate to Severe).  She is weaning off of prednisone (down to 30 mg/day), also takes Pentasa, and 6MP.  She started the 6MP last Friday.  She has been reading a lot about probiotics and HSO's.  She asked me if she could quit taking the 6 mp and start on Primal Defense Supplements. 

As her parent I want to do what will make her well with the least amount of side effects.  I also want to follow her wishes, to a degree, especially if it involves the side effect of possibly becoming infertile.  She knows that the risk is small because of her dosage, but isn't wanting to risk it.  My feelign is that what IF she is unlucky and beocmes infertile  she may hold it against me someday.  What if I am wrong to want her to take the 6MP??????   I can't possibly deal with the guilt of causing my daughter to become infertile or get cancer. 

I feel that if we do all we can do naturally, and then if it doesn't work she will feel better about takign the meds as a last resort--- and it will be her decision.  All of our consciences will be clear. 

I thought we had this all settled last week.  The doctor office called and we discussed this, they gave us some sound advice to do the 6mp NOW. 

I am praying that we can just come to a decision and stick with it, not second guessing ourselves.

Anyone out there that has beat Crohn's naturally?

Thanks,Jennifer

Hi What is the percentage of becoming infertile didn't know that was a sideeffect of 6MP. I have not beat it naturally I took meds and have had 2 operations crohn's related. I have fistulizing crohn's .Now I am not on meds but that is because I have had a resection if my disease was bad right now I would need meds. My CT shoed no inflamation so that is why I am med free plus the fact that I am in no pain ,if her DR. says there is a need for it then you need to think about her health first unless he has suggested something else that you appprove of. lol gail

Phew ! I really feel for you in this predicament ! Love and guilt are a dire combination to deal with. And of course, you may never have a clear cut answer as to what the right decisions to make are.
It strikes me Jennifer that as there are so many different treatments for CD, each of them varying according to which individual is being treated - and even often dependent on what has just suddenly stopped working for them - then there is a simple question that you need to be asking your doctors.
Why are they so sure that in this instance 6MP is such a good way to go - what supporting evidence do they have for this theory ?
It may be that they are following a proven protocol, which was set up following rigorous analysis of patient history outcomes. Or it may just be that this is just this particular practice's personal "recipe" based on individuals professional experience - in which case, all that may mean is that they haven't met up with all the different outcomes that are possible using different therapies. Heaven knows, there are enough drug companies working on doctors, sponsoring conferences, publishing carefully selected results....
To answer your last question, I wouldn't say I have beaten Crohn's using diet alone, but I certainly manage it. I have had three years of gradually improving health, after about twenty of deteriorating.
Two flies in that ointment; the doctors have just recently said that it was never Crohns (not due to a change in circumstance, just they can't find a note of the diagnosis !) and the reason I'm back on the forum after a long absence is partly that my gut is playing up again. Not nearly as badly as 99% of the people online here, but still, the old grumbles are just about audible again.
Typically you don't cure Crohns, the symptoms just go into remission for a variable length of time.
I will say one thing though. For most of human history, every form of medical science worldwide has emphasised the overriding importance of good diet in battling illness. If your daughter is on any therapy that sidelines the levels of nutrition she should but likely cannot have at present, then IMHO that needs to be addressed as a matter of urgency. Don't forget that doctors, being experts, are likely to overemphasise the importance of those things they know most about, simply because they are not privy to the whole picture. Rather like a mortgage lender complaining about not meeting his sub-prime lending targets....
( I don't think I'm doing that with those comments about diet, but how can I be sure ?)
There is of course another aspect to this. It is your daughter's body; if she is old enough to have a strong opinion, then perhaps she is mature enough to take responsibility for her own health, which is after all inevitable some day. And with such a complex situation, who can gainsay her wishes ? We're all on a learning curve with CD. Best of luck !

the makers diet worked for me. the scd is another good way to get it under control using diet. they are hard and you have to have a lot of self discipline to make new eating habits, but if you can stick with it many have had great results. give it time. it doesnt happen over night. more like a matter of months. first off, get off processed foods and sugar and soda and gluten and dairy. those are basic starters for diet.

i've tried acupuncture and chiropractors to no avail, but they do serve a purpose and i still use them.

if you want to go the natural route, find a good naturopathic doctor. some have super good results, better than some GIs.

imho, i dont believe just taking primal defense will solve her problems. there are better probiotics out there, but primal defense is better than many imho.

whatever she does, dont have her stop the meds cold turkey. that is potential recipe for super bad news.

Thanks for the responses.  My daughter is only wanting to get off 6MP.  She still wants to wean off Prednisone as directed, stay on Pentasa.

She has been reading up on the Makers diet and SCD.  I am really pulling for her to be okay with staying on 6MP until she gets safely into remission, (also using specific diet)

Once she is in remission, reassess things and hopefully just use Pentasa.  I don't think she thought about possibly needing Prednisone again.

Sometimes I feel like I read posts from people that are on the big drugs and still need surgeries and have horrible symptoms.  It is just so scary.  Gosh, I just am not handling this stress of limbo thinking right now.  I want her to just make up her mind and be done with it.  I completely understand her position, though.  She is such a bright kid, very structured, not your average teenager.  She wants to be a biochemist or work for NASA. 

I always invite her to read the responses you all provide, so I hope she gets a clearer picture of what could be at risk if she doesn't follow the doctors orders.  I want her to improve her diet and have researched the HSO's she mentioned.  So, we shall see.  Hopefully God will just speak to her heart.- and she will be enlightened by the knowledge all of you share.

CRAZYHARRY-- you mentioned better probiotics out there... What are they and where can we get them?

SNOHARE- good point about doctors being "bought" so to speak from drug companies.  I think he is just going from what seems to be the routine.  He was actually pushing for Methotrexate instead, but left the decision up to us.  He has been amazing to work with.  He stays with us and makes sure she understands every tiny aspect of her disease and treatment.  His nurse took us through an hour long education on Crohn's, the newer statistics, treatments, side effects, etc.  The nurses answer all the questions I could possibly have at any time.  I feel pretty comfortable that he is prescribing what he feels would be best for my daughter.  My Crohn's doctor is not so wonderful.  After I was diagnosed I told him all the foods that seemed to bother me.  His response was to eat whatever and that my diet shouldn't matter.  He doesn't take much time with me and if I have questions he directs me to CCFA.  That is a great resource, but sometimes I want answers from him.  I have NEVER been on anything but prednisone twice, and contiinual Pentasa.  I am glad, but also wonder if he is looking out for me, or just rushing to the next patient.

God Bless,

Jennifer

Jennifer~

Well I'm just sooooo impressed that your daughter is looking into all of this!!! My son is also very disciplined, is an excellent student, has no trouble following the diet, but as for researching he said, "you do it, mom, and just tell me what to do." (YES!!! He'll make someone a great husband someday! lol!)

Probiotics: There are many brands on the market. Some are wimpy (imo) while others are stronger. Generally speaking, experts say to choose one with several strains/species of beneficial bacteria and a total of at least 10-15 billion colony forming units (cfu) per capsule. I also feel strongly about getting them from a reputable health food store (usually in refrigerated section) rather than the corner drug store. That said, after my son's diagnosis, I settled on a probiotic which I order online--Theralac. You can google it if you wish. There are other good brands, though! I also think digestive enzymes are worth every penny!

We started the diet at the very very end of my son's prednisone taper after his initial diagnosis. He also started the probiotic about that time. Within 3 months, all of his blood markers had completely returned to normal. (He did have two minor flares during the first 3-4 months on the diet, at which point he did a liquid diet for 10 days on the first occasion and only 3 days the second. Could have been an intestinal virus, too--we'll never know...) At his 1 year anniversary of his diagnosis he was told by his pediatric GI that he could discontinue the Asacol. I am amazed and feel so blessed to have found the diet!!! If either you or your daughter wishes to email me, feel free!

One last thing... there's a great SCD support group at yahoo if you decide to go this route. It's one of the yahoogroups; BTVC-SCD. You simply sign up to be a member. Your daughter might enjoy it because you can post specific questions about the diet there and all the "experts" (those who have been following the SCD forever, and newbies, too) come forth to answer. It's really great!

Hey Jennifer!

I understand that your daughter wants to stay of meds. It would be great if we could all just do that because in the long run it's Crohn's Disease AND all kinds of side-effects along with it that affect your life. But I have to agree with what some people wrote and that is that if you let CD get out of control just once it can affect your whole life. I personally would be afraid to quit 6MP. I'm on Imuran, those are similar drugs, and it helped me get better. It usually takes 3-6 months for it to work and it took me 7. I was really happy that it worked in the end although it hasn't fixed all of my problems. I just know that if I wasn't on it things would be much much worse.

I also have something else to say. I know everbody here has their own opinion about different diets and that's ok. I have been on some lectures held by different doctors specialized for IBD and what I've come to find out is that it's important to eat everything. When I first got diagnosed I was told that I'm supposed to follow this diet and they gave me a list of things allowed and not allowed to eat. It was literally just bolied food...and not many types of vegetables and fruit. I got better really soon and was ok for two years. But I was losing all the vitamins during that period when I was ok just because I followed that restricted diet that my ex-doctor told me to follow. When I was able to eat almost everything, I didn't and my organism didn't get what it needed. Ultimately the food I was/wasn't eating led me to anemia and a relaps and like I said I managed to get better with Imuran but not completely and now it's all becoming worse again. From this I've learned that when I have diarrhea and when I'm bleeding, etc. I'm supposed to eat "light" food and on my better days I eat everything, all types of vegetables and meat and fruit. All that has a lot of vitamins in it, and I drink Dual Tabs from time to time, Folacin as a must, Ensure from time to time, and I get B12 shots. To get back to those lectures...they say each person with CD should eat everything and figure out what works for them. I found out that for me what works best is eating just different things and I'd be afriad to restrict my body once again with another diet (CD takes a lot of vitamins from our body anyways.), whether it's SCD or anything similar. But that's just me...

I also have to say that unfortunately most women with CD have problems getting pregnant. It comes with this disease. It doesn't mean that's her case, but I just thought it was important for you to know that. Oh, and I'd consider changing a doctor. If I hadn't changed mine I would have already been operated and maybe have a temporary stoma. I think it's really important to learn everything you can about this disease and be in the process of making the decisions, because doctors don't always know what they're doing.

Good luck with everything!

On the pregnancy aspect, the others are right. We will always have greater difficulty getting pregnant. I became pregnant when the disease was active, it killed the baby, nearly killed me, and the pregnancy put more pressure on my body in the mean time making the disease worse.
I probably will never have children after what I have gone through...not for my own sake but I have my views, which may be rather controversial, on passing on genes of this nature.

It is definitely possible to have a happy, healthy baby with this disease, but there is a lot more to consider than just your fertility. This is a much bigger decision to be made for the person you're giving life to and what kind of life that will be with the possibility of developing this and many other diseases.

whaley said...

I honestly feel that I would be in remission whether I took the Azathioprine or not. I wanted to stop taking it because of my risk to cancer but my Gastro talked me out of it. I've had promlems with a perianal abscess that keeps developing a fistual even though my internal CRohn's is under control.



My opinion (which may conflict with my experience) is -yes some of these nasty drugs can cause really horrible side effects but often the chances of developing cancer/infertility are increased only slightly compared to the 'normal' population. It's much more important to enjoy your quality of life now and feel well now than worry about a slight increased risk later on in life. Quality of life is everything to me and I'd rather be enjoying life now that in bed with Crohn's so sick that I can't function worrying about increased cancer risk later on. However, I never have experienced cancer/infertility so maybe I would feel different then.



The good thing is meds are developing all the time so I am hopeful for future and if you've got a cronic illness like Crohn's and see your Dr and go for blood tests regularly -anything else dodgy is likely to be picked up much earlier.



Crohn's is rubbish. I hope your daughter well soon. Go with her Gut feel (literally) and take your Dr's advice on board. Good luck!

I'd have to disagree with you on something. I think your CD would be much worse if you weren't on Azathioprine. If there's something I'm afraid of it's def Perianal CD. I was put on Imuran and it fixed everything for me exept this part of the intestines, but you know what? I think it's been holding it down from becoming much much worse and I am so grateful for that. For me Azathioprine is a miracle worker! Sometimes this drug (and I've read some people on this forum sayin that the same thing happened to them with Remicade) masks the symptoms so much and it helps you mantain more or less a normal life. I just know I'd be in a whole lot of pain and not to mention eveything else if I wasn't on it. But that's just my opinion...

I agree with what you said about cancer!

Jennifer, I'll just add here something you probably already know, and that's that both the Maker's Diet and the SCD are an *extremely healthy* way to eat. All foods are nutrient dense and the oils are high in omega 3s. After hanging out on the yahoo group for SCD, I have become aware that there are many GI doctors (more out east) who recommend the diet to their patients--even pediatric GIs! I've also become aware that there are many, many people there who are off meds because of the diet as well as those who stay on maintenance meds.

There are only two dietary treatments for Crohn’s disease that have been clinically tested in studies published in reputable medical journals and proven to be effective in human patients with Crohn’s. One is TPN (intravenous feeding). TPN is generally used only for short time periods in severely ill hospitalized patients since it carries with it a risk of liver damage and septicemia (infection). The other is enteral nutrition (liquid formula diets used instead of regular foods and beverages for several weeks or more in order to induce remission, and alongside regular food as a dietary supplement in order to maintain remission).

Enteral nutrition (also referred to by the names of the different classes of formulas as elemental, semi-elemental, and polymeric diets) doesn’t work for everyone, just like all treatments for Crohn’s. However, it is highly effective in people with disease limited to the small intestine, and has pretty good likelihood of success for people with disease in both the small and large intestines. Those with large intestinal disease only have the lowest chance of success, although it will work for some. The difficulty is compliance. If this treatment works for your daughter, and she is willing to stick with a liquid diet and return to it whenever she relapses, then yes it is an alternative to drugs. In Japan, where this is considered the gold standard treatment for Crohn’s, people do stay on enteral nutrition long-term to maintain remission. It is not a treatment widely used in the United States, although much more common in the UK, and to a lesser extent, in Canada. She could discuss this option with her doctor.

Hi everyone! This is Marie. I just wanted to say thank you for all the input. It has been very helpful! I think I am going to compromise and stick with the 6mp for as long as it seems necessary, at least a year, while incorporating probiotics and the Maker's diet. I might also try the Specific Carbohydrate Diet if I have the will-power to stick with it!
I don't know what I'd do without the support of my family and all of you guys. This has all been really confusing. But not even inheriting Crohn's Disease could ever make me want a different family. I don't think you guys need to feel bad about having kids!

Thanks again!
Marie

PS: If you have any recommendations for brands or places to getprobiotics and supplements, I'll gladly take it!

Hi Maire,

That's great that you were able to use the information and opinions here, to help you make a decision. As I mentioned to your Mom, please keep giving updates on how you're doing. Good Luck with everything.

Tom.