Daughter with crohns- 10 year old

Hello Universitypng,

I am sorry to hear of your daughter's condition. I hope she feels better soon. The difference between ulcerative colitis and Crohn's is how deeply the disease affects the bowel wall. Meaning, colitis affects only the inner linings of the colon (there is a more technical term that I forget) where as Crohn's effects the inner lining to the outer tissue.

I do not know whether the odds are greater of having one over the other.

I have Crohn's both in the small bowel and rectum. I just wanted to let you know that a drug called cortifoam might also be an option for your daughter. This is a foam that contains a corticosteroid, inserted into the rectum. This foam can treat the immediate rectum as well as travelling up the descending colon. It is very easy to administer and you get use to the idea of putting a small plunger type device in the rectum.

One of the benefits of this treatment is that it is powerful, like prednisone, but the absorption into the rest of the body is limited - reducing the negative side effects of ingested steroids.

I am an adult, so I do not know if this drug can be used on a child. Consult your doctor and always follow his/her advice. I just wanted to make you aware that an alternative to the two drugs you mentioned is available. Cortifoam has worked extremely well for me......

I wish your daughter the best of health in future....

she's having trouble taking Ascol pill . Also I think Asacol is more for colitis and not for crohn's ? Are there kids who are in remission with Asacol ?

If I may make one more suggestion, it would be very helpful if you and your daughter kept a diary of the foods she has eaten on a daily basis for a few weeks to a month going forward. At the end of every day she should rate on a scale of 1-5, as an example, how she felt re: the symptoms. Over this time period, looking at the diary, might help to pin point certain foods that are eaten consistently on days that she records not feeling well. She should then avoid these foods and see if that helps. ( ice cream might be such a food as it has lactose and carrageenan, which some studies have shown to definitely bother crohn's.)

If you find that there are specific foods that bother her, it would be great if the whole family could be supportive of her effort to avoid them. i.e. no complaining from anyone because that food isn't on the dinner table anymore.

Just my suggestions for what they are worth. Best of luck.

Post Edited (Adonis4) : 6/24/2012 4:12:39 PM (GMT-6)

gypsyfp said...
They gave me asacol after I was diagnosed as a kid.It worked really well, then not so well, and then they doubled the dose, and I was fantastic!
But I guess my Crohns was very mild as a kid.
I had a really hard time swallowing the pills too.
I was just a kid. I had never swallowed pills before.
I used to just take liquid medicine, so it was a real struggle.
My dad had to teach me how to take pills.
First, he made me swallow a grain of rice, then a raisin, and then the pill. It was hard. I choked a few times and the pill went flying across the room, but I got it down eventually!
I felt so much better with the asacol.
In fact, I felt too good. My parents started thinking that I was misdiagnosed and not really sick.
I eventually went off the meds and just dealt with my mild symptoms for years untill finally they all came back 200 times worse in 2009.
Now I'm considered severe with abscesses and fistulas. Who knows if my disease would have progressed at the same speed if I had just taken my meds all these years?

Hi Gypsyfp : How long you were in remission .....from childhood to say 2009 ?

Don't believe in remission.
It's just a false sense of security.
Even if you feel fine, your disease is still progressing.
The problem is that it progresses differently for different people.
During those 10 years, I never went to a doc, never took any medicine.
Of course, I had symptoms during that time, but I never went to a doc because I felt that the pain I was feeling was nothing compared to what I felt when I was a kid.
I thought that my ability to eat = good health.
But that wasnt true at all.
I had my first abscess in 2008 and ignored it, but I couldn't ignore the second one in 2009, when I had no insurance.
I've had this disease for 15 years now and it's only seriously attacked me twice throughout that entire time, but in those two times, it completely killed my will to live.
I've learned a horrible lesson from going med-free and thinking that I was in remission, and so I come on websites like healing well hoping that someone else will learn from my mistakes.

My daughter is now 11 and was diagnosed at age 91/2 with Crohns/colitis. She went on Pentasa and lots of prednisone over two years until just recently. We experienced our first really bad flare which put us in the hospital for a week at which point she was started on Remicade. One week later, she started to flare again and had her 2nd dose of remicade at exactly two weeks. At this point, we ended up back in hospital for 36 straight days. Unfortunately, they were not able to save her colon. She had a complete subtotal colectomy with iliostomy ( poop bag out her tummy:(. She is only 11. We are now waiting for pathology to come back and help us decide if this is more crowns or colitis. They cannot be 100% sure I am told. I am confident in 6-8 weeks she will heal beautifully and receive her 2nd surgery. ( J pouch ) and then 6-8 weeks more before 3rd surgery to reconnect her small intestine to her rectum. Within this ordeal, I found something very interesting; doctors I met do not believe this is food related and do not believe natural remedies can help. Perhaps they are right but I would advise to listen to your doctors but also do your own research; Take Omega 3, 6, 9, vitamin D,and some other stuff..... My daughter was unlucky to have such serious bad affect so soon... ** I am not sure how important this is but within my 36 day admission, it came down to a very fast " She needs surgery". I was not prepared, I had no idea of anything really.... Before I talked myself in to scheduling her, I called 3 other hospitals to make sure I was understanding everything and to see if anyone else had other advise. I believe we did the right thing of for my daughter but 2 hospitals asked if my daughter had some sort of genetic test for Crohns vs. Colitis. When I looked in to this, My daughter did not have this test back in 2010 when originally diagnosed. I was told it is too expensive of a test and it can't be 100%. Again, does not matter at this point but as a mom..... I would have liked to know about this test since they from day one they said "most likely" Crohns... possibly Colits. Now, they are saying Looks like Colitis... probably not Crohns. Anyway, My advise for anyone with a child with IBD of any type. Do your research now and make sure you get to know your GI doc and follow up on these blogs. A company called Digestacure swears by there product? I did not get a chance to try and I am still meaning to read his book online.... Whoever I spoke too had a lot of info... but again, I did not try this product.
In addition, I found the most amazing Surgeon!!! I hope you will never need this option but we ( my daughter and I), very much lucked out on the surgeon who happened to be at the hospital this day. Please email me if you have any questions.... I am not sure how much wisdom I can offer but I can tell you and share any emotional concern or any steps in which I took... My daughter starts middle school this coming september.... with an iliostomy bag:-( She is not looking forward to this. From what I can tell most people with this bag love it.... Unfortunately for my daughter, she was not sick enough prior to be ready to get rid of her colon. Her surgeon asked what he could do for her.. " She give me my colon back!" It was a funny moment at hospital but now week one into being home.... its a very new life to get use too.... If I could do it all over again, I would seek out the best known Naturalpath specifically to treat IBD or auto immune. I do not believe removing her colon was the best option... The best option would have been treating the auto Immune problem but we did not get this chance. In a few years.... I bet they will figure this disease out! Wishing you the best and I do believe you can make your daughter healthy working with both your GI Doctor, a natural path and possibly getting some allergy food tests done... My daughter ended up being very allergic to Eggs- took blood tests in hospital. Again, I am not an expert in any of this but boy do I wish I knew what to give your daughter. ** Also, my daughter is allergic ( or can't metabolize as the Dr. said ) a couple of the safer medicines which are used typically... Methotrexate and Azithro something a rather.... My GI doctor was very smart ahead of time and tested her first to see if she could use these drugs... Very small percent of folks who can't.. She was lucky that this doctor thought of these in her original diagnosis! All things happen for a reason??!!! Lots of prayers sending your way!

My understanding is that Asacol & Pentasa are in the same class of drugs with Asacol being a better option for colon disease and pentasa for small bowel disease. I successfully used Pentasa as part of my treatment plan for a long time. In my experience, typically I'd need prednisone to induce remission, start taking Pentasa, then remain on Pentasa after I was done with my course of steriods. For me, it would be working by the time I was off prednisone.

Not everyone responds to drugs in the same way, but I think it makes sense to start with the ones with less side effects and work your way up the ladder as disease progresses. I know that a lot of doctors are changing that approach, but I think a lot of peds doctors are still sticking to that plan. Especially if the doctor considers it a mild case, perhaps a mild anti-inflammatory drug is all your daughter will need.

I had trouble swallowing pills when I was first diagnosed, too. It is terrible when that awful tasting prednisone gets stuck in your throat because it dissolves quickly. I found that even to this day I prefer to take my meds, especially the quickly dissolving meds with something other than water. For example, I found milk to be an easier liquid to swallow pills with.

Patchy inflammation is indicative of Crohn's rather than UC. Crohn's can occur anywhere in the digestive tract, and just because you see it in the colon now does not mean it will stay there.

My GI told me that when you first fall ill with Crohn's your disease "declares itself" in a characteristic way, and that this will be the nature of the disease forever. I've never had a fistula and I don't expect to ever have a fistula. But I have had a stricture and I remain wary of that risk. Now, even though my disease is not particularly aggressive, I still take my meds and stay vigilant, because slow disease process can cause significant damage over a long period of time. Many people on this forum can testify to that.

You will know when your daughter is in remission when she has NO symptoms. That is a complicated assessment, especially for a mom of a 10 year old. And for your daughter, too, she is not old enough yet to have a lot of experience with her body; plus it's changing rapidly at this age and there are new sensations all the time. Be patient. Stay in close contact with her DR. Do frequent bloodwork to check for inflammatory markers, iron and nutrition.

You treat Crohn's and Ulcerative Colitis with the same drugs, so there isn't a whole lot of thinking to do right now about which one she's got. This might become more important later on; with ulcerative colitis, you can "cure" the disease by removing the colon. I'm sure you do not want to remove your daughter's colon at this time.

The different kinds of IBD have different kinds of response to the basic medications. You should talk to her GI about what approach s/he recommends, and why. Do some reading if you have the time and inclination to read scholarly articles on this topic. Here's a link to one I think is very informative.

Hi Universitypng - So sorry to hear that you daughter is sick, it is soooo hard to watch our children suffer, much worse than being ill ourselves. You sound like a great Mom keeping well informed about her disease. Remission is definitely possible!! I was in remission for years and it was like I never had Crohn's. Just keep her on her meds even when she is feeling better! Like others have mentioned, it doesn't really matter if it is CD or UC, because the treatment plan is pretty much the same. But I would say that the absence of granulomas is more indicative of UC. Good luck with everything!

She has ....only one or two BM a day .

I want to wish you and your daughter the best of luck as well. You both will get through this and it will make both of you closer for it.

When I was diagnosed at age 18, I had a terrible time swallowing pills. Before being diagnosed, I wouldn't even take Tylenol. I simply could not swallow them. So I would try every day but can honestly say I was probably only able to take my pills 30% of the time. After that bout, my Crohn's ended up becoming so severe that I really had no choice and just had to take them. I was finally able to do it through enough practice. I also agree with clonehead, I have found that different liquids are better than water to take pills with. I try as little as possible not to take them with a carbonated beverage, as the carbonation can hide whether or not you actually took the pill. The liquid that I have found goes doen the smoothest is apple cider. It's nice and smooth and also delicious tasting.

My doctor called it 'pill phobia'. There are plenty of articles about it. This article in particular looks good: http://www.spraynswallow.com/linksPhobic.html. It talks about what the underlying fear actually IS.

We wish you the best and are always here for you!