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My teen daughter was just diagnosed...please answer some basics for me.

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Posted Yesterday 2:32 AM (GMT 0)
My 17 yr old daughter was just diagnosed this week by colonoscopy. Her gastro said "mild Crohn's" and recommended Entocort for 2 yrs and then rescope. I have tons of questions and have spent the last 4 days reading. My brain hurts with information overload...and fear.

What is the best we can hope for here? Is there anything such as a typical Crohn's course so we know what to expect? Does everyone eventually end up on immunosuppresants and heavy duty steriods and surgery? Is this a disease of little control? Internet reading and CD forums are scary. cry

So much conflicting info about diet and supplements. Hard to believe a GI disease is not influenced by what you put in the system. Our gastro said "take the drugs or she WILL get worse".  Her symptoms are mild now (stomach pain is main one but some joint pain) so I plan to do a week or so of research and maybe get several opinions. I don't want to gamble with her health but don't want to jump into steriods without educating myself to come up with the best plan.

That SCD...what about that? Where is a place to get more than antecdotal stories?  I am interested in personal accounts but need some science behind it. This is a huge common disease (I know I am saying this to people who know this..sorry!)...surely there are good studies about alternative treatments? Help me find them.  

I plan to meet with the doc this week and get more clear on how he diagnosed,where the disease is, how he staged it in terms of "mild", why he choose a 2 yr course of Entocort, and what he expects for her.

Tell me anything I need to know. Thank you!

Posted Yesterday 2:59 AM (GMT 0)
Hello and welcome!

Wow, you have many questions.  First of all a small word of advice....do not let your internet reading and research overwhelm you.  You are going to read horror stories and see thngs about this disease that will scare you.  From the sound of it, your daughter is nowhere near that.  This place is great for dispelling rumors and fear.  It is much more in depth than any info I have gotten from drug company websites or CCFA.

Let's see, some basics for you.  CD is very individual to each person.  Your daughter is like me with the mild dx.  She does not have excessive trips to the bathroom with bloody d so that is where the mild comes in.

There is not typical course as this disease is so individualized.  You are not headed for the big boys (drug wise) yet.  A lot depends on how she responds to the meds.  Only Entocort, no other meds?  The entocort is a very mild steroid, generally well tolerated with limited side effects and designed to work specifically in the intestinal tract unlike prednisone that effects your whole body.  Better entocort than prednisone.

Yes, if you do not get a grip on it now it can/probably will get worse.

Your doctor's hope is to get your daughter into remission quickly and with as few pills as possible.  Once into remission, she can anticipate taking maintenance meds for the rest of her life to keep her there.

Diet did not cause the disease.  You probably read that by now.  As well as the fact that it is also considered an auto-immune disorder.

Your daughter may want to keep a food journal to help her find the things that cause her gut pain and avoid them in the future.  You may be surprised to know that a lot of what you consider "healthy" food is probably off limits.  A safe place to start there is consider anything that is a gassy food, especially something like brocolli, as unsafe.  Some people here follow that SCD diet plan and have had success with it.  What you have to realize now is that your daughter showed signs of inflammation inside and that needs to heal.

Just my opinion, I think the personal accounts and knowledge amassed here surpass a lot of what you will get out of the doctors office.

And lastly, for now, a word of assurance for you.  If entocort is all the doctor prescribed, it sounds like he caught it very early and hopes to achieve remission easily.  But finding the safe foods and sticking with them will go a long way towards helping.

Hope this starts to help.

 

Posted Yesterday 3:38 AM (GMT 0)
Thank you!
Posted Yesterday 3:53 AM (GMT 0)
I feel for your daughter, being so young.  I am 36 years old and was diagnosed at age 14.  When it comes to this disease, everyone is different.  For myself, I always do better health wise in a warmer dryer climate.  Studying Crohns, I feel that is might be a bacteria that we cannot fight of.  Perhaps try a naturopathic doctor that is respected.  I live in Vancouver, and found my natuorpath when I was basically on deaths door. It helped immensily.  When it boils down, everyone is different with this disease.  But I do beleive that positive attitudes make everything better.  As a mother, of course you are going to be worried, but try not to show that in front of her.  There is always a way to live with Crohns, individuals, given that differentialism, is possible.
Posted Yesterday 3:53 AM (GMT 0)
Does everyone eventually end up on immunosuppresants and heavy duty steriods and surgery?

Nope. My brother has had Crohn's for 12 years (I think... Over 10 years at any rate) and has never been on immunesuppressants or had surgery. He does go on steroids for flare-ups, but he's not on them all the time.

I'm just telling you this to show you that Crohn's can be relatively mild and controlled. And my brother isn't the only one. You'll tend to see mainly the more serious, or resistant, cases on internet forums: those who are well usually don't seek out internet forums to post on.

Is this a disease of little control?

Can be. But not inevitably so. It really depends on how your disease is genetically 'programmed' to behave and how well you respond to the meds on offer. At the moment, there is no way of predicting the future course Crohn's will take. As a rough rule of thumb, how your disease starts tends to reflect how it will continue to behave. So if it starts off aggressive and severe, it will tend to continue to attack that way in future (albeit with sometimes very long remissions in-between); by the same token, if it starts off very mildly, it will tend to simmer away mildly. A word of warning from personal experience, however: do not let even mild disease fester away, uncontrolled. Chronic inflammation over time cause its own problems, including irreversible scarring, fistulas, strictures, etc. (Note: fistulas don't happen to everyone, but if active Crohn's goes unchecked for long enough, strictures (narrowings) of the bowel will nearly always form. It usually takes years, although occasionally it can be very rapid. But I think rapid stricture formation only ever occurs in those with severe or aggressive Crohn's.)

I'll let other folks explain about the SCD. It's a very strict diet. Personally, I'd rather take meds, but that's just me...

By the way I would ask the doctor why he's not using one of the 5-ASAs. Seems to me they're a safer drug for maintaining remission than even a low dose of Entocort.

Good luck. I really need to go to bed now!
Posted Yesterday 4:09 AM (GMT 0)
I would like to hear testimonials from other sufferers of Crohns regarding meds.
Posted Yesterday 4:18 AM (GMT 0)
so sorry to have to hear your story, I hate hearing kids having this at so young of age. I was 20, I'm 60 now, unfortunately ssdi because of cd, but anyway, I can't add a whole lot you have gotten great advice, journal for sure. ncot hit it right on the head, if you start out severe,(like me) then more than likely surgery at some point, but that is not such a bad thing, it gave me remission for 15-17 years ea. resection I had with no meds. (mistake), stay on top of her med's, especially now at her age you can control, it's when they go off to college, you know how kids are, not in pain why take it. find out her trigger foods, her trigger times of the day is also important. for me now, i can't eat breakfast unless I go to br at least 2-3, then as the day goes toward evening I can't eat much at all because my stomach it seems has food in it so most all food is a trigger in early evening or late afternoon. good luck and keep posting, people here will give good advice, we tell you our experiences over our life with cd, but your gi knows more than this forum about your daughter.
Posted Yesterday 4:27 AM (GMT 0)
Hi kmfdm. I'm glad you came here, you are going to get a lot of good help.

I was diagnosed about 10 years ago. It often takes quite a while to get the right diagnosis for a bowel disorder. I hope you and your daughter haven't been struggling too long trying to figure things out. Having a diagnosis by scope is really solid, and that should help her negotiate her treatment. Lots of times people get fuzzy diagnoses and spend significant time chasing the problem.

I have pretty mild disease. I've been treated with the 5-ASAs and occasional steroids for most of the time since my diagnosis. They work well for me. However, I have struggled with joint pain and arthritis, which is a pretty common complaint among people with inflammatory bowel disease. I see a rheumatologist and a GI. They don't necessarily agree on the course of treatment I'm on. My GI wants to keep it safe and maintain me on my current meds. My rheumatologist wants me to maintain my joint health and put me on biologics. So far I haven't taken this step. I have been through a tough year in my personal life (house fire, yikes!) and the stress got me in a pretty bad flare (for me). That situation is getting much better so I hope that less stress means less joint pain. I'm feeling pretty good these days.

Your dr's recommendation for 2 years of entocort doesn't sound quite right to me. Many people find entocort will give them the same negative side effects of prednisone if they take entocort too long. I've taken it - it's a great drug, but wickedly expensive - but only for a 6 month period when I was trying to address inflammation in my wrists and hands. I weaned off that and put another relatively safe drug in my pillbox (sulfasalazine). I haven't taken any steroids since then. In my 10 years of Crohn's I've taken prednisone only once, and that again was to deal with significant joint pain.

You can see my meds in my signature. If you have any questions about specific meds you might want to start a thread just for that. Also, there are some threads already on many of the meds we take - hopefully you can get lots of info by searching on them.

Best wishes for an easy week.
Posted Yesterday 4:32 AM (GMT 0)
Sorry to hear about your daughter's diagnosis, but you've come to the right place for information and support.

I think one of the best things CDers can do is go on a strong multi probiotic, vitamins, take digestive enzymes if they have a lot of diarrhea and upset stomach, and eat a natural, nutritious, easy-to-digest diet, and take their meds.

I agree with everyone about the meds. Don't be too scared, there are some meds that are stronger and some weaker.
I've been on Entocort in the past, my CD is quite persistent, though so Entocort didn't help a whole lot. But that could be different for your daughter, as e1 here said, we're all different.
When I was on Entocort, I had clotty heavy periods. I've read it can cause period changes, so be on the lookout for that.

A lot of ppl with CD have varying degrees of success with diet. The SCD and the Maker's Diet are pretty popular here. They are generally about starving bad bacteria in the gut, boosting immune system, healing and reducing inflammation, and feeding the body highly nutritious food. Sometimes the diets have to be tweaked for each individual.

I hope your daughter will find a treatment that gets her in a lifelong remission.

Take good care of her!
Posted Yesterday 4:58 AM (GMT 0)
Try not to let the internet scare you too much.... All the people with really mild cases of it don't come posting on the internet how great they are doing. It gives a sense that everyone with crohns has it terrible...

I was just recently diagnosed with it myself, about a month ago and spent over a week in the hospital from it and couldn't eat anything for over 3 weeks.. I had a hole in my intestines from it, but I think mine only got so bad this flare up because I waited so long before getting initial treatment. Time will tell how bad it ends up really being for me. I'm on steroids(just until this episode heals up, then i'll be tapering off the steroids) and Pentasa now. If I understand correctly(but I may not) the Pentasa is very similar to Entocort and i have had no problems with the pentasa, except actually remembering to take it all four times a day. I can't really give any advice or different treatments since I'm new to it myself, as well.

I'm not the best with comforting people, but I'm only 19 myself, so if your daughter has any interest with talking to anyone else around the same age who was also recently diagnosed I'd be happy to do so.
Posted Yesterday 5:42 AM (GMT 0)
rebaisme, welcome! and your doc is right. Crohn's needs to be treated. Since you are your daughter's advocate, you will probably want to get a copy of the colonoscopy report (the printed report plus the disc) as well as the labs. It's not hard to interpret labs because the lab company helpfully points out the normal range right on the report. You can scan the lab to find all the "H" for highs and "L" for lows to find out what is not normal. Then, if there's an abbreviation you might not understand, like "BUN," you can look it up on www.labtestsonline.org Crohn's patients tend to be low in vitamin D and B12, so these labs should be done (my guess is they weren't.) 

SCD: to find out about SCD and the science behind it -- the theory around polysaccharides --  you can get the book, "Breaking the Vicious Cycle" by Elaine Gottschall. The diet is based on the original Celiac's Disease diet created by Dr. Haas...the author discovered it and used it to heal (nothing "cures" Crohn's or UC) her daughter's ulcerative colitis. You can also check out the website www.breakingtheviciouscycle.info No formal SCD clinical trials have been done. And will not be done any time soon...doing a clinical trial of diet is not like doing a clinical trial of a pill. To conduct a clinical trial of diet, you would need to be able to totally control what the patient eats...this means the only way you could be sure the patients didn't cheat would be to hospitalize them 24/7...I don't think anybody will be signing up for this kind of a trial;) Even if there were signups, how would the study be funded...which drug company would volunteer? Hmmm. Clinical trials of medication are far easier to control...you can insist the patients show up daily, weekly, etc, to receive  their doses, to ensure compliance. SCD is hard to follow, but basically a healthy diet that gets rid of all the junk most of us eat. You can always try it for a month or so... a four month tryout is optimal. But don't jump into it until you have read the book and are fully prepared. My daughter thought she had it down pat, but then discovered that a juice that says it has only apples, raspberries, and vitamin C is "illegal" because the vitamin C contained starch and sorbitol. Thanks to the SCD, our whole family is more aware of how to eat healthy. 

    

Entocort will help ONLY patients who have Crohn's located ONLY in the terminal ileum. You mentioned stomach aches - sometimes people use the term "stomach ache" when the pain is actually in the abdomen. If her Crohn's were in the stomach then the Entocort would not help, so my guess is you mean abdominal pains? True, Entocort is a steroid, but because its action is targeted mainly to one area in the body, this means the systemic effects (throughout the body) are minimized. It is unusual to prescribe Entocort for two years right off the bat. FDA guidelines are for Entocort to be prescribed at up to 9 mg (3 pills), for up to 8 weeks, daily, to get the inflammation under control (near remission). Then the dosage can be reduced to 6 mg for another 12 weeks for maintenance. Clinical trials showed continuing any longer on Entocort doesn't offer any more protection than a placebo. BUT my daughter stayed on Entocort for years, on just one pill, with no flareups...we think she succeeded because she combined the Entocort with a modified form of the SCD (she included potatos and rice)...her stricture went away while she was on Entocort combined with modified SCD. But her colonoscopy showed a couple of small spots of ulceration, so it wasn't clean. Entocort does NOT induce full remission - for instance a CRP of under 1, a low sed rate, and a clean colonoscopy. In fact, Entocort allows inflammation to continue, albeit it at a slower pace. The labs might look OK, but the colonoscopy will not show mucosal healing. Entocort can also, over time, raise blood sugar, eye pressure, deplete bone density, etc. Also, when my daughter is on Entocort, she tends to get sicker with a virus, and sometimes has to resort to antibiotics because the viral infection then turns into a bacterial infection...

You can also check out LDN. My daughter used LDN to taper successfully off Entocort, and enjoyed great health for a year, because the LDN seemed to boost her immune system. When she tapered off the LDN almost two months ago, her Crohn's symptoms came back for the first time in years. So a few weeks ago, she went back on Entocort to nip the inflammation in the bud, and also started strict SCD. Did the LDN put her into full remission? No. Like Entocort, it seemed to allow a limited amount of inflammation to continue. But, unlike Entocort, it did not suppress her immune system, so she didn't even catch a cold in the entire year she was on LDN - within two weeks of discontinuing LDN, she caught a bad cold that lasted three weeks.  More info at www.lowdosenaltrexone.org A formal clinical trial HAS been done of LDN, showing it can induce remission, and a second LDN trial was concluded last year and is supposed to be published soon. We didn't find any side effects for LDN, other than fatigue, low appetite, and abdominal rumbles, which were gone by the end of the second week on LDN.  

Probiotics like yogurt are a must. But we steer clear of fish oil capsules, which haven't been proven to help in Crohn's. 

Posted Yesterday 9:44 AM (GMT 0)
Welcome to the Board. cool

I am the parent of a teen who was diagnosed with CD at age 10. He is almost 15 now. I am also active on the Dragonpack.com IBD Parent's board (separate from Healing Well) and have learned a tremendous amount there. Much of what I say comes out of my participation on that board over the past 5 years.

My thoughts/info/suggestions:

1. Consult a pediatric GI who specializes in treating IBD ASAP.

I believe that teens are not adults in terms of physical and emotional development. They need to be treated by doctors who understand this and take this into account. Usually this means the best care will be provided by a pediatric GI rather than an adult GI. Most ped GI's treat kids until at least age 21.

2. You are a great mom - I can tell yeah . Your job is to help your daughter find a great GI doctor and together learning to be effective advocates and expert patient/caregiver.

I truly believe that you cannot turn yourself into a ped GI and should not try. Ped GI's have an MD and usually 8 years or more of post graduate training. They are specialists among specialists. You need a good one who will engage in dialogue with you and your teen and respect your decisions. But that doctor also needs to be firm with you and your teen when he/she feels strongly about a particular treatment approach. That kind of give and take requires strength and knowledge on both sides.

3. Expect change and uncertainty to rule the day, at least for the next couple of years.

Give up thinking that you will be able to figure out what is the "right" or perfect treatment for your daughter or that any one treatment will turn out to be a lasting solution. In general, CD treatment is a matter of trial and error. It is not unusual for it to take several weeks to months before it is clear whether a treatment is working and to what degree.

The first 2 years post-diagnosis are often a rollercoaster as you find the right doctor, the right diagnosis, the right treatment - most through trial and error. Don't let it make you crazy. smhair

4. Steroids - the drug we love to hate.

Be wary of treatment that relies on steroids, especially prednisone, for more than a very short period of time. Steroids generally provide rapid symptom relief but not healing and carry a host of potentially damaging side effects. Entocort is a topical steroid but it is up to 25% systemically absorbed and suppresses growth in children/teens, among other side effects. In terms of side effects, it's usually a better choice than prednisone. But to say she will need it for 2 years and not even consider some other options like 5-ASA drugs doesn't make a lot of sense to me and would send me searching for a different doc.

5. Is it really "mild" disease? Will it stay mild? Prognosis?

If the only diagnostic testing that has been done is a scope and labs, this is insufficient to enable the GI to declare your daughter's disease "mild". Other testing such as an MRI-Enterography (preferred), Pill Camera, Small Bowel Follow Through, Abdominal CT are generally required to rule out small intestine disease that can often be quite severe despite mild disease in the colon or pretty "good" labs.

If there has been no other testing, you need to get your daughter to a different GI ASAP.

Crohn's is notorious for sneak attacks. You can look and feel fine, even have good labs, and still have bad things happening in your gut. Generally you need maintenance treatment for life, often with immune modulators (mercaptopurine or methotrexate). With the development of the biologics (Humira, Cimzia, Remicade) IBD treatment has advanced light years for those with severe and treatment-resistant IBD. But it's too soon to tell how much these changes in treatment patterns will change the typical progression of the disease and prognosis.

There are people who have very mild disease. Typically these folks have a single bad flare at diagnosis and then only very mild symptoms the rest of their life. 5ASA drugs and dietary interventions often work well for them. There's no way to tell if you are one of these folks until you have had no major flares for a number of years so it's safest to presume that you are not in this small minority and treat more aggressively.

Without treatment, I think it's safe to say that CD will progress - how fast is impossible to know.

With treatment, CD may progress but it is likely to be less severe/rapid progression.

With treatment, she is still likely to eventually need abdominal surgery but we could be talking 20+ years from now. But she's almost certainly not going to die young from CD. Chances are good that she will be able to hold a job, go to school, be a mom - whatever she wants to do with her life.

6. Additional tests/labs

Bone Density screening should be done (DXA Scan) and repeated every couple of years.

Vitamin levels (especially Vit. D and B-12) should be checked.

Ferritin or iron transfer tests to assess extent of anemia should be done.

There should have been blood tests and/or biopsies taken to rule out Celiac Disease.

If she has D, there should have been stool cultures done to rule out c. diff and other infections.

7. SCD and other nutritional interventions

All intense dietary/nutritional interventions require your daughter's active cooperation and commitment. Without that they will fail and you are, in my opinion, better off not even trying them. Save them for the future. Do not fight with her over this and do not stress your relationship with her any more than necessary. It's already going to be stressed. Obviously, if she is interested in these alternatives, then by all means help her make it happen.

SCD is a very restrictive dietary intervention that does help some people but not others. This statement is true for virtually every CD treatment out there so it will be up to you and your daughter to decide if this plan is workable and worth trying.

In children, high rates of remission (60+%) have been achieved by doing a period of several weeks of exclusive enteral nutrition. There's not a lot of research into using this with adults.

Enteral nutrition means she drinks liquid formula (could be Ensure or Boost or a prescription formula) exclusively for several weeks to rest her gut while providing excellent nutrition. No regular food by mouth. Can drink water (dietician will say how much), occasional 7 up and hard candy. That's it.

Up side - most people for whom this works get symptom relief in a few days to 2 weeks. Quickly improves nutritional status. Produces mucosal healing - which entocort and prednisone do not do, they just suppress the inflammation.

Down side - most people who achieve remission or symptom improvement this way still need some other medical treatment - 5ASA drugs, immune modulators - to maintain their remission. Not eating regular food can be difficult, even traumatic for those with a strong biological compulsion to chew/consume food.

Can be used to calm a flare without increasing maintenance medicaitons.

8. What can you do now that might help and is unlikely to hurt?

*Add a good probiotic to your daughter's diet either through yogurt or supplementation.
*Offer calcium supplements - at least 1000 mg a day is usually rxd.
*If she has lost a lot of weight, is having severe D (diarrhea), or is malnourished, encourage her to add 1 or more cans of a complete nutritional formula such as Ensure or Boost to her diet.
*Encourage her to drink water and good quality hydration drinks if she has D
*Reduce the amount of gluten and lactose/milk protein temporarily. These molecules are the hardest to digest and she may do better if she eats less of them for now.
*Offer vit B complex supplements

As others have said, online support forums tend to attract the sickest patients and the newly diagnosed who are actively seeking information, support and help. Those who are doing well - they are busy with their lives and not spending time on forums like this. Chances are good your daughter will be doing the same sooner than you might expect.

Best wishes

Patricia
Posted Yesterday 1:01 PM (GMT 0)
rebaisme~welcome to the forum...this is a great place for information, but like it has been mentioned, this disease is VERY individual so I would not worry about 'what ifs' shakehead as you read all the information out there!

I was just going to give my two cents but rlsnights has already done that for me! Please seek a second opinion with a Peds GI (or, a second opinion if your doc is a Peds GI)...my concern is the decision about the Entocort for two years. You could even send your reports to any one of the teaching hospitals out there to get an opinion by some of the front line Peds docs of this disease!

Ask your daughter to keep a food diary of what she ate during the day and how it made her feel. Don't argue about what she is eating (easier said than done, I know!) because the more information she records the more you'll know about how she is feeling. You can always alter your shopping list to exclude the items that are very bothersome but remember to not 'punish' the rest of the family and restrict what they eat.

best wishes, too!
Posted Yesterday 2:21 PM (GMT 0)
Hello (and sorry that you have to be here)

I was in the same position as you are this time last year(son was 16 then, diagnosed last Nov)

The reading and conflicting info/advice/theories etc can drive you to distraction. Firstly, try and limit yourself to how much research you do each day, research is good and allows you to think about decisions but initially there is simply too much of it and when you are trying to adjust to the fact that your child has a chronic disease if you are anything like I was you just want to sit and cry at the unfairness of it all and what sort of life your child will be able to have etc.

Personally I would be a little concerned with the fact that they want to put your daughter on entocort for two years. Son was on full dose for couple of weeks and then spent nearly 3 months 'weaning' off of it. Although a lot of people do not get acne as a side affect, he did, he was plastered so if your daughter is unfortunate to suffer with this get treatment for that asap as it can almost be as devastating as the Crohns. Not that this is why I would be concerned about entocort, the concern is that it is a steroid and generally is used short term.

SCD does appear to work quite well for some but in our case there was no way that son would tolerate eating such a restrictive diet(whatever route you go you need the full co-operation of your daughter-not to state the obvious or anything wink )

What was done for my son was that he was put on Pentasa(and entocort), he then had 7 1/2 weeks of total enteral nutrition(all over last xmas mad )  Solid food was then re-introduced over some 3 weeks in stages. For him the pain returned and azathioprine(immuran/immune suppressants) was prescribed.I must admit that I didn't want him to move onto the next level of drugs(reading the side affects are always scary) but generally he is in a good place now, colour has returned to his face, has more energy and has gained nearly 28lb oh and grown a whole cm :D (every bit helps when you are short)In additionto his drugs he continues to have one bottle of enteral nutrition a day as well as taking pro-biotics, and various vitamins/minerals etc.

What works for one may not work for another, it may take a while to hit on the right treatment but once you get there things can stabilise. Find a specialist that will work with you and install confidence, who actively encourages you to do your own research and just as importantly one who will then take the time to answer all the questions that your research brings up :)

I know that you are about to have a really steep learning curve, give yourself time to digest everything a bit at a time and a year from now you will be amazed at how much you have learnt and how well you have managed to deal with this.

Posted Yesterday 2:37 PM (GMT 0)
Hi Rebaisme and welcome to Healingwell.  First off while Crohns is not a pleasant disease to have it is not a death sentence.  I have lived with Crohns for over 35 years now.  I have 3 grown daughters (all conceived after diagnosis), 6 grandbabies, been at the same job for nearly 21 years and married to the greatest guy on earth.  While there have been some bumps in the road, I still have been able to live a pretty normal life.

I am a firm believer in maintenance meds.  I once enjoyed a nearly 20 year remission med free.  Would I do it again?  Heck NO!!  My remission ended with me needing a resection due to complete obstruction.  While I was busy getting on with my life, my Crohns was still in there doing its damage on a microscopic level without me even knowing it.  And because of a now fired GI who told me after my surgery I didn't need meds, I had to have another resection only 3 years later.  I am now a good girl and am compliant taking my maintenance meds.  I am in remission again and only maintained on Asacol. 

As for diet, it is pretty individual for most of us.  I personally follow a low residue diet all the time.  This is an easy to chew, easy to digest diet.  Others follow diets such as the SCD or Makers diet.  Personally for me, these diets are too restrictive and too much work, although some have success with them.  To have success with the SCD or Maker's Diet, you must be 100% compliant with them for them to work. 

Some are having some success with LDN.  You might try typing LDN into our search engine above and should read some info about it.   Once again, this is something that works well for some and not for others.  As you can guess, this disease can be very individual for many and the same in other ways.

Again welcome to forum, ask any and all questions you may have, and I am sure one of our great members will either have experience or guide you in the right direction.  Hugs!

Posted Yesterday 2:38 PM (GMT 0)
I think this disease is very individual, and so the treatments and diets are individual. This is not a death sentence, so please do not be too worried (I know easier said then done). I would say for my experience this disease does do worse under stress.
Posted Yesterday 6:22 PM (GMT 0)
Probably tardy to the party, but I thought any info would be helpful to you.

I was diagnosed at around 10, so I've tried my fair share of stuff and, as much as the steroids suck, sometimes they're the only option. I'm on them right now actually, Remicade stopped working for me, so I'm on the 'roids while I wait for the transfer to the new medication. I know the term steroid and all the side effects seem scary, but all the things that could go wrong if you don't take the drugs and doctors advice is far worse.

That said, good luck to you and your daughter.
Posted Yesterday 10:58 PM (GMT 0)
You might want to check out Low Dose Naltrexone.
Posted Today 12:21 AM (GMT 0)
You've gotten a lot of info already, so I just wanted to say welcome. I was diagnosed at age 19 after dealing with symptoms for about 2 years. Like others have said, the first year or 2 are the worst. You're overwhelmed with information, questions, and worries. Unfortunately diet and medicines are so individual, so you'll have to learn what works and doesn't work even if you read what works and doesn't for someone else.

I would encourage you to have your daughter come to the forum and read and ask questions when she can. I think it's SO important to learn about yourself (even if your mom learns, you need to as well) and ask questions and get support. To me it's one thing to have a caring parent who learns with you, but it's completely different to ask questions as the patient and have a fellow Crohnie answer. Just my opinion...

Also, remember that the majority of what you read online will be worst case scenarios. You'll stress yourself and scare yourself silly if you read every thing that could possibly happen. I like to take the approach that "if" something happens, I'll deal with it then. Sometimes it's not easy, but I try.

One last thing, make sure when you settle with a doctor that you are completely comfortable with them. I've switched GI docs a few times because I didn't feel like I was being heard, didn't feel like I was being treated enough, etc. It's not wrong for you to "shop" for a good GI. Your daughter is going to be going to them for some time, so you should like them and feel like they know what they're talking about. It's also good to take quesitons with you to appointments and take notes if you need to refer to them later.

Good luck to you and your daughter!
Posted Today 1:59 AM (GMT 0)
Sorry to hear about you daughter. I am 21 and was dx at 18. I never thought I would make it this far. I am the only one in my family to have it, so I felt very alone, but did not know of this site. Your daughter is already better off than me. I don't know about the doc saying its gonna be entocort for 2 yrs. I started off on entocort at first because I too have a mild case of cd. It was only as needed, until I was put into remission. If she is anything like me she will hide the symptoms when a flare starts, DON"T LET HER! It only makes matters worse. I did it because when I am not feeling well my Dad worries no stop. I didn't not want him worrying about something that he or myself could not control. Everyone with cd is different which I am sure you know by now, but just stay stong and positive. She will have her down moments, and she will also have times when she is feeling like she is on top of the world. Vitamins will become her best friend...also lots of calcium, my bones already crack like crazy. Just take it one step at a time, don't worry about surgeries yet, I am sure she is still far from them.

Good luck to your daughter and your family. It is an adjustment for everyone.
Posted Today 2:19 PM (GMT 0)

I read this forum a lot because my 21 yr old son has crohns, but I have never have posted before, but since you mentioned SCD diet, I thought I would tell you what success my son has had with it. 

My son was diagnosed when he was 16 with  crohns in the lower colon and with a rectal fistula.  The doc put him on pentasa to stop the D and white mucus, and he also had surgery to put a cton in the fistula.  My son called it an "anal piercing" tongue

After his diagnosis, I did a lot of research, and I came across the SCD diet which sounded really interesting, and since we had nothing to loose by trying it, as a family decision, we decided to give it a shot.

What I read about this diet is for it to really work well, you need to follow it to the absolute letter without any exceptions or cheating, and you need to commit to living the diet 100%.  So we decided as a family project, to give this SCD a try 100% and see what happens. 

To help my son stick with the diet, both my wife and myself and my daughter committed to following the diet also. It was a family adventure, so to say. One thing in our favor was my son was not a picky eater, so giving up pizza, McDonalds, coke and ice cream; to begin eating only low carb SCD food was not as difficult as we thought it would be.  What also helped was that my wife likes to cook, so she was really into making SCD meals.   Matter of fact, I had more trouble giving up junk food then my son did.  I believe that my son's cton "anal piercing"  was real motivating factor for him to follow that diet. He hated that thing.

The D actually went away within about a month after starting the diet, but I really attribute this to more from the pentasa he was taking, then the diet.  Anyway, after about 9 months on the diet and pentasa, the mucus in the BMs finally went away, and  the fistula actually healed up so much, that the surgeon removed the cton to let it heal up completely, which it did.    

My son is now 21 and away in the university. On his own decision, he completely stopped taking the pentasa when he was 18 and went to college. We told him that we thought it was a bad idea to stop the pentass, but he wanted to know if the diet was really working or not.  

Well,  I guess the diet is really working for him because he is still symptom free without any D or mucus, and without taking the pentasa.  In the university he still follows the SCD diet, but not as strict as before.  In the three years since he stopped the pentasa, he has only had one small flare about two years ago, which he attributes to "gross diet neglect".  He went back on pentassa for three months and followed the diet 100% and the mucus stopped. He stopped the pentasa, but follows the diet more strictly now, and he has been symptom free for over 2 years and still going strong with the diet.  I admire my son because of his dedication to the diet, I don't think I would have the motivation he has.

Posted Today 3:12 PM (GMT 0)
Like NY-Sooner, I admire my daughter's drive to stick to a hard diet, and don't think I would have the motivation she does. I told my daughter the primary responsibility for managing her condition was hers. Docs could help, but no doc was going to manage her disease on a day to day basis...she needed to listen to her body, learn about the disease, and decide what did and didn't work for her. 

This advice echoes the CCFA website: "By learning all you can about coping with IBD, you're taking a giant step in taking charge of your illness -- and your life." Today, she is 23, and thanks to meds/diet has been symptom free for years, following all her dreams including graduation from college and holding down a job. 

The CCFA (Crohn's and Colitis Foundation) website has a good deal of useful info: http://www.ccfa.org/living/?LMI=1 Also, the www.pecanbread.com website is useful for parents of children interested in SCD.

Posted Today 4:58 PM (GMT 0)
Reba
I'm a little late here, but welcome. looking at the replies, you have some very good advice. it may seem a overwhelming, but take small bites. some will work for you, some won't. the only thing I would like to add is to reitterate some things said here.
YOU DID NOT CAUSE THIS ! Once you get handle on this fact, you can focus on what you can do to help.
You are your child's advocate. You will have to make some hard decisions regarding meds. Be informed.

Just because your GI tells you to do something, does not mean there is no choice. Doctors are not gods, just people.

This will be a confusing, emotional time. Crohn's is a part of your daughter's and your lives. It is not your entire life. Don't let it consume your every waking moment. And remember, this is her condition, not yours. Let her own it.

No matter what someone tries to sell you, there is no cure(for now). there will be. When it comes, it won't be for sale online, along with a cure fore cancer, shingles, HIV, etc. We all have moments of desparation. For now, all you can do is treat the symptoms.

this is a long row to hoe. some stuff will work, some won't. it can be frustrating.

Your daughter will rebel. Understand, and be there for her when she needs you.

Cry sometimes. You're allowed.
Posted Today 5:39 PM (GMT 0)
Hi- I was diagnosed when I was 14 and I am 28 now. I have had to go the route of heavy duty drugs and surgery. I am actually currently in the hospital recovering from my 2nd resection (first was nearly 10 years ago) and this is actually my 9th Crohn's related extended hospital stay in the past year and a half. For me...it's been a very serious illness but it might not be that way at all for you daughter. Crohn's disease is highly individualized, as others have already said. Also- triggers for the disease can vary widely among those who have it. All those specialized diets would not do a lick of good for me, since no specific food or type of food has any effect on my disease. This may or may not be the case with your daughter, she should pay close attention to the foods that she eats and how they impact her symptoms so she can make any changes that would be best for her. A total diet overhaul may not be appropriate. Things like stress and lack of sleep are common symptom triggers as well. Your daughter will understand her body better as time goes on and will be able to identify what may be her personal triggers. Also, I wanted to tell you I have also been on entercort for an extended period of time- it helped me a lot but I did suffer from some steriod side effects like weight gain, which is hard to deal with. But that being said, I would greatly prefer entercort to prednisone anytime! Often, the side effects of the medications we have to take are very hard to deal with. But it's important to keep in mind (for me anyway) that it's better to deal with some of these side effects than to be in the hospital.
Posted 12/1/2010 12:32 AM (GMT 0)
Welcome! This is the best board out there and I am so sorry to hear of your daughters diagnosis. You have gotten a wealth of information already so I will keep mine short

This disease is not alike for any two people I have found. What I can eat someone else can't and vice versa. I feel best when I avoid any raw veggies(cooked are ok) and any whole wheat or wholegreain anything. Keep a food diary and just have her note what foods cause a reaction. Many people really endorse the SCD diet but I cannot do it. Way too much work and luckily my diet does not have to be super restricted

I am currently on entocort with no side effects. If she is slated to be on it for 2 years definitely talk supplements with her GI. Calcium especially. I am also taking mine with a maintenance med called LIalda. I have mild crohns also and we started with this first.

Also have her talk to anyone she needs about the emotional side of this. Psychologically this disease can do a number on you and it helps if you can talk to people about it.

I too researched the internet when I suspected I had crohns and not IBS and I cried for 2 hours. As many have said typically well people do not go to boards for support. I know for me I do not post as often because I do feel guilty knowing my meds are working and there are many here who suffer and are struggling to find something that works. I come back as often as I can because when I was at my lowest this board really helped me and I want to pass that on. Good luck to your daughter and come here as often as you need.

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