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

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55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 1/28/2009 4:40 PM (GMT -7)   
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.  cry
 
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
DX in 2000,  on Pentasa only :)
daughter age 15 dx with Crohn's on 12/22/08:  Prednisone, Nexium, Pentasa
 
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/28/2009 4:58 PM (GMT -7)   
You might want to research the controversy surrounding HSO's and primal defense supplements first of all.
I strongly believe that at least a maintenance medication should be taken and especially in your daughter's case if it is moderate to severe.
It's good to start with changes in diet and adding probiotics, but this healing process can take a very long time and may require the assistance of medication initially if your daughter absolutely refuses to take it.

I understand the desire to want to heal naturally, but many complications can arise in the long run. I'm sure there will be other members along to share their stories...and I'm not saying that it is impossible, but the risk factors of quitting all medication can be much greater than taking the meds themselves. I'm not trying to be rude, but it just really worries me when people decide to stop taking their medication. I literally would have died without mine. My body wouldn't even accept the natural stuff anymore(even water).
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 1/28/2009 5:09 PM (GMT -7)   
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
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 1/28/2009 5:23 PM (GMT -7)   

I stopped taking all meds in December....    I havent felt this well in a long time!

I am wondering if I really even have chrons...


28 Yrs
Michigan
Newly diagnosed with Crohns


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 1/28/2009 5:35 PM (GMT -7)   
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.
nono 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.... yeah
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.
eyesTwo 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....
(eyes 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. yeah Best of luck !

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1496
   Posted 1/28/2009 5:50 PM (GMT -7)   

Jennifer,

As I (may) have indicated in another post, I don't reply to very many, as there are many here far more experienced and in position to offer you more help. I too have a 15yr. old daughter with a similar situation. She will be starting Imuran soon, and I have had many of the same concerns about these meds as you have. 

I was where you are about 2 years ago. I had alot of the same questions about the meds, and a more natural approach. Ultimately, it will have to be your decision. Most of the imput I recieved was to stay with the meds and use the natural approach with diet and supplements to assist. The problem is, if you allow the Crohn's to get out of control over and over, you run the risk of damage to the intestines, and a repeating cycle of Prednisone to get it back to remission. My daughter is currently on her second bout with Prednisone. She had been on Pentasa for the last two years, but looking back, I don't know if it was working for her at all, and if a more aggressive maintenance drug was used, then perhaps her remission would have continued without any complications to go with it. 

Hindsight's 20/20 of course. Hopefully, you'll get plenty of imput from others, and this will help you make the right decision for you and your daughter. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 1/28/2009 7:13 PM (GMT -7)   
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.
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


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/28/2009 7:36 PM (GMT -7)   
Just my opinion:

She's on 30mg pred, this is no time to experiment with natural methods. I think she needs to get things under control first.

See if she will compromise by taking both the 6mp and probiotics at least until she gets off the pred for a few months.

I've never heard of someone with CD becoming infertile at the dosages we take it at.
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 1/28/2009 7:58 PM (GMT -7)   

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


DX in 2000,  on Pentasa only :)
daughter age 15 dx with Crohn's on 12/22/08:  Prednisone, Nexium, Pentasa
 
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/28/2009 8:03 PM (GMT -7)   
Your doctor sounds like he needs replacing...

The SCD diet is a great way to go. It doesn't work for everyone, but I have seen vast improvements on it(or rather, my own variation) like many others.

I think it is possible to find remission after weaning off of prednisone through diet and stress management in addition to staying on pentasa. I think that's a really good idea actually.

How did you find a different doctor for you daughter? It just baffles me that a doctor dealing with diseases of the intestines would say that diet doesn't matter. And yet, it's common sense for those without these diseases to avoid foods that later cause abdominal discomfort. It's not rocket science...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/28/2009 9:55 PM (GMT -7)   
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! smilewinkgrin 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!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 1/28/2009 10:27 PM (GMT -7)   
i learned the hard way... stay on the meds. i'd personally stay on the 6mp until she is completely off steroids and have been off them for at least a year. This way you can see that it holds you over through the seasonal aspect most of us go through. It is quite rare to become infertile on 6mp on our dosages. Don't forget also, alot of people who go on whatever natural remedies may have been in remission anyway due to the flare/remission nature of chrons. They may even be ok for some years... but likely its going to hit again. In my case, it hit me extremely hard to the point where I won't ever consider stopping 6mp again. The next time she gets in a severe flare, the meds might have a harder time working to get it under control. Good luck.

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: Coming out of flare -9/19/08 - now|Salmonella - 11/15/08 - 11-29-08|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 4 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 5 mg (tapering)|6mp 50 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .275 mg (tapering through water titration)|Trazodone 50 mg|Doxycycline 200 mg
 
 
 
 


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/29/2009 7:04 AM (GMT -7)   
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!
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.

Post Edited (caroline_r) : 1/29/2009 7:08:16 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/29/2009 7:21 AM (GMT -7)   
Well I have lived with what the doctors consider mild Crohns for over 33 years. I once enjoyed a long remission, med free. Would I do it again, HECK no! While I was busy getting on with my life, my Crohns was still in there doing its damage microscopically. My remission ended with an emergency resection due to a complete blockage, followed shortly thereafter by a liver resection, and then 3 years later ANOTHER bowel resection for another blockage.

I only take Asacol at this point to maintain my Crohns, along with a low residue diet, and probiotics. If things should start to act up, I will not hesitate to go back to 6mp. I am a firm believer in maintainence meds except for those people like PB4 who are allergic.

With her Crohns being consider moderate to severe, my personal opinion is if she wants to feel relatively well, she best listen to her docs. Good luck!!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/29/2009 7:37 AM (GMT -7)   
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.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


whaley
New Member


Date Joined Feb 2003
Total Posts : 15
   Posted 1/29/2009 7:42 AM (GMT -7)   
When I first got ill with my Crohn's disease at 20 when I was university, the Drs took about a year to diagnose me and in the meantime I got sicker and sicker.  When I finally got a diagnosis, my Gastro put me on Prenisone for 6 weeks and my Crohn's straight into remission. My remission lasted for 5 years and I felt so well during that time I almost forgot that I had ever had Crohn's disease, I think my mind blocked out all the pain and suffering etc..
 
Because I was far way at university I had Drs in my uni town and home town and when I finished uni I went travelling and moved to LOndon and sort of dropped out of the health care system.  I didn't see my Gastro anymore and pretty quickly stopped taking my Pentassa as I felt I didn't need it.  I wasn't on any other maintenance meds.
 
 
Unfortunately, 5 years later Crohn's came back with a vengence.  I recognised symptoms straight away.  Saw my Gastro and he put me on Predisolone for 6 weeks.  Felt loads better straight away but soon as I tapered to 5mg I felt symptoms come back.  Straight after I finished dose I went on holiday to Mexico and was so poorly.  I should have been in hospital, not holiday.  As soon as I got back I was put on 8 weeks worth of Prednisolone and this put me back into remission.  My gastro put me on 75mg Azathioprine as a maintenence med and now see him regularly.
 
I have now been in remission a year.
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!
 
 
 
 

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/29/2009 8:19 AM (GMT -7)   
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! yeah 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!
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/29/2009 8:24 AM (GMT -7)   
LMills said...
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.


I'd have to agree on this one with you. It's what worries me so much! To give my child Crohn's Disease would emotionally kill me. The thing that worries me even more is that I've heard that if you have CD and your child gets it from you - it's always worse than your own CD. Worse complications, worse symptoms...everything. So yeah, it's a big problem and it's hard to decide what to do...
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/29/2009 8:32 AM (GMT -7)   
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.
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


Crohnie_Mel
Regular Member


Date Joined Jan 2009
Total Posts : 23
   Posted 1/29/2009 8:48 AM (GMT -7)   
Hey Jennifer! Has your daughter been tested for a gluten allergy? I have been reading so many new cases where doctors are misdiagnosing Crohn's and Colitis when it could be for the most part Celiac Disease. In August I stopped taking Remicade because it was hurting more than helping and while deciding if I wanted to get involved in yet another research study I started acupuncture and a gluten free diet. I was very skeptical about acupuncture but it really seemed to work. My bleeding had stopped in a couple of weeks and I was more regulated. My acupuncturist was also very clear on how she wanted me to eat. No gluten, no red meat (unless it is boiled to take out bacteria and slow cooked), no dairy and limited roughage (salad and certain veggies). I didn't realize how much particular sauces or breads effected my GI tract until I went off of them! For a 15 year old I am sure this would be a nightmare since at 25 it was nearly impossible for me to follow but there are so many more gluten free products out there -- stores like whole foods, trader joes and many websites carry GF products and are created specifically for this diet. Is meat hard for her to digest? If so I recommend a slow cooker...it tenderizes meats and vegetable and I've found it very helpful. If you want brands and certain GF foods I enjoyed send me a message and I would be happy to share! Hope she is feeling better soon!
Melissa -- New York City
Diagnosed with Crohn's in 2005


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 1/29/2009 2:49 PM (GMT -7)   
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.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 1/29/2009 2:52 PM (GMT -7)   
PS: if enteral nutrition does not appeal to her, I'm all for continuing 6-MP. It's a good maintenance medication. I've never heard of it causing infertility, by the way.

55555jlw
Regular Member


Date Joined Dec 2008
Total Posts : 103
   Posted 1/29/2009 8:22 PM (GMT -7)   
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!
DX in 2000,  on Pentasa only :)
daughter age 15 dx with Crohn's on 12/22/08:  Prednisone, Nexium, Pentasa
 
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/29/2009 8:36 PM (GMT -7)   
Hey Marie,
I'm glad to hear the decision you've made. I think it's definitely a wise one :) If I could tolerate gluten I would definitely be on the Maker's Diet instead of the SCD so I really hope it works for you!
Do you guys have a Vitamin Shoppe store anywhere near you? I go there for pretty much everything aside from actual prescribed medicine. They have really great probiotics and multivitamins(definitely a must...). I use solgar brand probiotics, but if you can find something with say like l. acidophilus and reuteri then you're good to go. Just remember they will probably make your stomach feel bloated and 'busy' when you use them at first, but keep at it and things should start to calm down. Generally, a lot of us have tried to find brands for any sort of extra capsule without added gluten, starch, dairy, sugar, and so forth. I know that the SCD website also has a really good multivitamin for sale.

Also, just to add even though it is not a supplement per se, I cannot stress enough how much tea helps as long as it doesn't have caffeine. I've found, from the suggestion of another member, that peppermint tea helps in calming things down. Ginger does as well, but I have difficulty getting something so strong down.

As for your medication, it shouldn't affect your ability to have children. I know there are a few you have to stay away from should you become pregnant, but others(like humira) have not affected the health of children that some members here have had. So, you can still have a beautiful, healthy baby :)
There are just issues with some of us from ethical standpoints and, at least in my case, from personal experience. Believe me, after an ectopic pregnancy and emergency surgery it makes you think twice about trying to bring another life into this world.

In any case, I wish you the best of luck! There is no reason why you cannot lead a happy and productive life in spite of this disease. Who knows? Given the increased attention, funds toward research, and advances in medical technology we may even see a cure in our lifetime. There are many exciting things going on in research...just stay positive and hopeful. Attitude really makes all the difference.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1496
   Posted 1/29/2009 8:37 PM (GMT -7)   

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.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.

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