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JodiMaddie

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Apr 16, 2011
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I just would like to share my daughters story with everyone and hope to meet some parents and children that maybe able to help us out or just be there to chat so we dont feel so alone ! My daughter started bleeding last April and it lasted 6 weeks , took 3 doctors before we were referred to a Pediatric Gastro specialist. The first few doctors thought she had picked up a bowel bug so started her on antibiotics and did stool samples . She kept getting worse and the bleeding wasnt stopping so I took her to emerg where they did bloodwork and from there referred us . Dr.Bax our specialist did a colonoscopy and confirmed with us that Maddie did infact have a Severe case of Ulcerative Colitis . He said this was probably the worst case he had seen ! SInce then she has had 2 more flares the last one being in December right after Christmas . She was started on Prednisone which worked well until we got her down to 2 tabs , 10 mg and she would flare again so she was on it for 3 months total . We have been off of it for a total of 1 week and she is bleeding again. I am so afraid he is going to say to start it again , and the side effects have been horrible for my daughter and as far as im concerned it is just a bandaid !!! Can anyone give us any tips ? Diet ? Natural products ? My poor little girl keeps asking me why this had to happen to her and she feels so alone ! Any help would be appreciated !!
 
First of all welcome to the forum Jodi!
There are so many caring parents on here with children
who have been diagnosed with Crohn's or Colitis just like Maddie,
I'm sure many will jump in with help for you and your daughter.

Crohn's and/or/ Colitis are difficult to diagnose and are often
misdiagnosed as a bug or infection of some sort...a colonoscopy
does confirm a diagnosis though.

I know the prednisone has side effects but it is a great drug
as a first defense in trying to halt the flare.

There are many many other drugs the doctors can try...
I'm so sorry this has happened to Maddie...
it's very hard to explain to a child what is happening when they get sick.

Please keep your chin up and we'll get some input from others here.

Sending out healing hugs to Maddie.

~Nancy
 
Don't feel alone!!! My daughter was diagnosed with Crohn's Disease just before Christmas last year. the last few months have been a horrible roller coaster ride for us.... she was on Prednisone for 2 months, she currently takes Pentasa and has her regular Remicade appointments. We just got the good news that she is in Remission. I completely understand the Prednisone - that was the worst for us and her. She too asks "Why me?". I have no magical solutions for you but thoughts are with you. Just wanted to let you know taht you are not alone.
 
I was bleeding when I was 9 years old and my mom took me to the ER right away. 2 months later I had a Crohn's disease diagnosis while being hospitalized the entire time. Prednisone helps in reducing inflammation so it is not a band aid drug. If Prednisone is a band aid drug then all the drugs are since there is no cure for IBD. When I was a child I took Asacol, 6MP and Prednisone to get my flares under control. I'd contact your GI and have them add another medication to get this flare under control and if she has to take Prednisone again then so be it (along with another drug). I took it a total of 4 times in my life so far (I'm 29 now) and it does help a lot and relieves a lot of symptoms. Yes there are side effects but there are side effects with any drug and I'd chose Prednisone again over bleeding to death. No amount of foods or natural remedies are going to stop the bleeding, she needs a med check.
 
Just want to say thanks for replying . I realize prednisone does work to get the flare down but with my daughter it never really took it away ! She has a "moon face " and was being teased by other kids ! Breaks my heart as a mother . I know the side effects of the drugs are better than the bleeding . SOrry im just very frustrated and tired of seeing her suffer ! I feel horrible not being able to make her better ! Today i must say has been one of her worst days yet ! I am a nurse myself and I know there are other drugs out there we can try ! Just wish i knew what causes her flare ups so we can eliminate it !
 
Also , our specialist did say he didnt want her on prednisone long term due to the effects it has on her little body ! She has also had quite a bit of back pain !
 
Diet wise I find it very hit and miss, theres foods that ppl cannot tolerate on here which im totally fine with and vice versa. I'd look up what food are easy to digest and what are not. Dont stop her eating any but keep a close eye on what she eats/drinks (people find a diary of what the ate and how they felt every day helps). Although some days I can eat all the stuff im fine with and still feel bad the next day, whether thats down to stress or jst the disease i dont know.

Welcome to the forum and hope you find the info on here helpful
 
Thanks rygon ! I am def gonna try the journal actually someone else did mention that to me as well ! Also she just had an accident with a bike and tore all the ligaments in her foot so this time im sure that hasnt helped her UC either , stress and inflammation !
 
ouch! the poor lass :( hope she recovers from that soon, torn ligiaments are really painful.

On a side note, it would be worth you filling out your profile details sometime (click user panel) as medication and help varies from country to country. Just helps us know where you live so we can help you the best we can.

With food I also find whats good for healthy people isnt necessarily good for us crohnnies. Ie corn, salad, wholewheat, some fruit etc. Totally changed my diet really, but i do think keeping away from ready meals and high sugar foods is a good way to go.
 
Hi Jodi
Sorry you and your daughter are having a rough time.
There are a lot of really great parents on this forum who are very knowledgeable and caring. I am sure once they get a chance, they will comment on this thread. Must be very scary to have a child with this disease... especially since they have hard time understanding what is happening.
I hope you find some relief soon and welcome to the forum :)
 
Hi Jodi, sorry you've had to look for this place but glad you've found it!! Have the docs mentioned any maintenance med after the pred taper. It sounds like Maddie will need something much stronger than Pentasa. My 11 yr old son will soon be starting Humira after a year on 6mp. The meds are scary but necessary in my book!! I hope they find something soon that'll put Maddie in remission and keep her there!! Good luck, I know how hard it is on you mom!! Hang in there!!
 
Hi Maddie's mom! Sorry to hear about your troubles. I have a 10-year-old son with Crohn's. We have done the Prednisone(& moonface), Pentasa and 6-mp. None of them helped a whole lot. Since last summer we have been on Remicade and it has been awesome ever since. He was dignosed at 8 and was bleeding some here and there in the beginning. He had more problems with tummyaches,sometimes so bad he could not stand up straight,and going to the bathroom 11 times a day. He has also had a painful fistula. It is so hard to see your child in pain and not being able to do anything. I just wanted to say that there is a light at the end of the tunnel. They will find a medication that will work for you daughter,it might just take a little while. Having this awful experience will make her a tougher and stronger person. Good luck and hang in there.
 
Hi Jodie, you are a good mom to come on here and help your daughter. With Prednisone everyone has a love/hate thing with that drug. Prednisone is better for short term and quick taper, it helps get it in control but gradually starting another drug to help maintain the inflammation and get back to normal. Prednisone robs the bones of calcium, so anyone taking it should take a good amount of absorbable Calcium and Vitamin d3. Let us know how the doc appt checks out. I have seen a dietician for digestive bowel diseases and she was remarkable, could be a good thing to get your daughter to go. When they are young they need the nutrients to grow. Take care, hope she gets some relief. As Mark says, Humira could be a good med for her. :hang:
 
I want to thank each one of you very much for all your help ! I am so glad I joined this site , i feel some relief having people to talk to ! TOday has been i think the worst day with this disease . She had a friend over and they were playing and laughing and she has been bleeding so bad today that she had an accident ! I cried she cried , its awful . SHe has major pain in her tummy as well. I was tempted to go to emerg but the wait time is 6 hrs . We will wait this out and see our specialist 8am monday and I will keep everyone informed !!! Jodi xox
 
Hey Jodi
I am also from Ontario and the majority of ER's are triage. If you are thinking about taking Maddie to ER then perhaps maybe that is a good idea. If you tell them she has a severe case of UC (and the fact that she is a child) they may take her right away or expedite the process. The last time I went to ER, I was in fairly quickly once I mentioned Crohn's... and I live in a big city.
I am glad you found the site.
Wendy
 
Last edited:
Hi there Jodi and welcome to the forum!
Sorry you had to find this place, but glad you did ! :thumright:

My daughter has CD. She was diagnosed a little over a year a go, but has been "ill" off and on since she was 9. So I definitely feel your pain, and I have also cried right along with her when the situation called for it!

Hang in there hun! You will find some great people and advice here!

I'm glad you have an appointment for Monday with her Ped. GI, but by all means if she gets worse, if I were you, I'd take her kicking and screaming into the ER and make sure they don't want to make you wait for 6 minutes, never mind 6 hours ! :ybiggrin:

Once again...welcome ! And remember.....Breath, breath, breath! :hug:

:hang:
 
Oh Jodie I am so sorry you are having to go through all this! I am glad you found us! My Daughter-in-law was DX with UC a month after giving birth. Within 2 months (I think) she was put on Remicade! It helped her out a lot. As being a nurse you know they need to get that bleeding under control! That's top priority .....at least make sure it's not hurting her blood counts! I really don't think diet helps my DIL much except not eating much. But that's not an option for your daughter! As you can see I also have 2 sons with CD. The youngest has had a tough time with the teasing due to the m-face & some other med related issues. It is very hard for the young ones as all they want to do/be is accepted like all the others. Daniel has a tough skin but I know it still hurts. I hope our kids make some awesome understanding friends through all this!!!
 
Hi Jodie and :welcome:

Oh my, what a difficult time for you and your little girl. :(:(:(. I'm glad you have found your way here 'cause there are so many knowledgeable and friendly people hanging out here and we are all here for each other when the chips are down and when the times are good!

Just wish i knew what causes her flare ups so we can eliminate it !
Click to expand...

Ah, the $64,000 question......Unfortunately that is something that may never be known. I personally believe that many things can alleviate symptoms, give you a better chance of staying in remission and make life overall more pleasant but I also believe that for a lot of people the relapse into a flare is out of their control.

Have you seen the suggestions regarding a diary in the wiki......

http://www.crohnsforum.com/wiki/Diary-Inclusions

I'm glad you are going to see the doc tomorrow, please let us know how things go. When it comes to the ER, I don't imagine that when you present a child that is bleeding and/or in pain you would wait for hours so if need be please don't hesitate to take her to the hospital. I know I am in a different country but we have many similarities in our health care and when I have taken the kids to the ER they have never had to wait longer than 10 minutes.

You have been given great advice and there are may avenues still to pursue as far as medication is concerned. I wish you all the luck in the world and I hope more than anything you can find the answers you seek for your little girl and she finds relief very soon.

Sending loads of (((HUGS))) and (((HEALING THOUGHTS))) your way......:hug::hug::hug:

Take care, :sun:
Dusty
 
Managing Stress

Hi Jodi, Welcome To The Forum from a Newbe. I am not sure about stress with children but when my crohns was in parcial remission, a bad day at work or even family related stress would cause me to flare for about three days at a time. It happened more than once so I know it wasn't just my imagination. I also had a love - hate relationship with Pred but it was the only thing for me that worked. One size definately don't fit all with these deseases. Its tough but hang in there ok and welcome again to the forum. Adults have all they can do to deal with UC or CD so for a child it must be even more frustrating. God Bless Bob E - Maine
 
I hope the appointment went well and that you guys are getting some answers/tests done/new meds prescribed. Poor thing can't be bleeding like that. Even though I was diagnosed 20 years ago, I would still go to the ER if I were bleeding because its not normal and could be very serious and I prefer to get treatment ASAP which the ER's around where I am are able to do. Having to wait even a couple of days isn't necessary. When in doubt, go to the ER.
 
Jody, when Max has had bad tummyaches in the past,we stick to a "soft" diet. Lots of mac&cheese and other noodles,soup,bananas, yoghurt and Carnation breakfast drinks.This usually helps right away.I also let him ice cream as a treat.Maybe it's something you could try.
 
Kat said:
We just got the good news that she is in Remission.
Click to expand...

Does the doctor determine this all from blood work? My son started Humira end of January. At our last appt his sed rate had come down from 73 to 30 and his CRP was normal. She didn't want to see him again for 3 months so we see our GI doc again on May 18. If his #'s are good from blood work does that mean the magic word "remission"? My son still has some cramps every now and then...but nothing like before. He numbers them a "2" or so. Last 2 days he's had some diarrhea, and it smells funny. Could this be diet, stress, or maybe he's got a 'bug' related or is it Crohn's? Its hard to know what is normal...and what could be that the Humira isn't doing its job. We haven't gotten the 'all clear' words yet...how long on Humira does it take to get there?
Do any of you have kids in 'remission' but still have days of diarrhea or mild cramps?
Thanks
 
Brian'sMom said:
Do any of you have kids in 'remission' but still have days of diarrhea or mild cramps?
Click to expand...

I'm in remission and yes, you can still have days of having diarrhea and cramps. Remission simply means that you aren't in a flare. Your disease is under control but we still have symptoms from time to time unfortunately. There are medications that can be prescribed for annoying symptoms like diarrhea (for instance, I take Lomotil which is stronger than Immodium).
 
My daughter's GI Doctor considers his patient's to be in remission when they are symptom free. Since she started on the Prednisone, Pentasa and Remicade everything settled down for her. Her symptoms were bleeding and mild stomach cramping. All that has disappeared once her diagnosis was made and her treatment started. Our next time we see the doctor is in August and then they will do blood work to make sure her blood levels are within normal limits. So right now her remission is based off of being symptom free. We are very new at this, but they were wonderful words to hear! Good thoughts and wishes sent your way.
 
Thanks guys for all your help and kind words . We are trying the antibiotic first to see if that will help at all , i doubt it will since her stool cultures came back negative but he said its worth a try . Im sure she will be back on the Prednisone by Friday :( And then we have to start Imuran . I am very nervous about all of this but i also cant sit back and watch my little girl be in this much pain all the time and she is still having 10 stools a day with pure blood !!!! Does anyone have any tips for her tummy , she says that it hurts really bad when she relaxing it , she has to suck it in to feel ok . A friend of mine said to try Papaya Enzymes before meals . She isnt eating very much at all right now , but is drinking !
 
Jodi have you tried her on Ensure or one of the breakfast drinks?
Don't let her become dehydrated as it can happen so fast especially in a child.
Jell-O..pudding cups..applesauce, soups. Weak tea helps the pain and a heating pad on low with a towel or blanket in-between.
How about a quiet warm bath with a warm face cloth on her tummy?

I am on antibiotics along with my other meds...seems to help.

Please don't worry too much, I know it's hard, but try to keep a positive attitude, for your daughter's sake as well as your own.
If she sees you upset she is going to get upset, and frightened
and then the Colitis kicks up again.
I try, unsuccessfully to live a stress free life, which doesn't always work..
but it sure does help.

If she needs to go back on prednisone...it's okay.
Be thankful there are so many drugs out there to try...
and the doctor is going to hit on the right combo for Maddie...
I just know it! :)
Heart Hugs.
Message or email me anytime.
 
JodiMaddie said:
Just want to say thanks for replying . I realize prednisone does work to get the flare down but with my daughter it never really took it away !
Click to expand...

Our new GI doc isn't a fan of prednisone unless its last resort. Things have gotten pretty bad but she hasn't ever gone there yet. It seemed like prednisone has a quick result, but as soon as you decrease the amount the symptoms come back. For our son the second time he was on prednisone, the results weren't good and his sed rate continued to climb while he was still taking the full dose. Our old GI doc just wanted to up the dosage. I sort of felt like it was a bandaid too. Symptoms seemed to come back bigger and worse after weaning off. The side effects for my son were not good...trouble with sleeping, he described a feeling in his brain doing "WIZZZZ", he had wierd 'unacceptable' behavior moments...etc. Maybe some kids just have more trouble on this drug than others.
 
Hi,Brian's mom! Max's last sed rate was 4. It has never been that low. Anyway, a couple of weeks ago we(I) made the mistake of giving him some peanuts. That night he had bad stomachcramps all night and felt like he had to throw up,but never did. The next day he was fine. Then,about 10 days later he had a salad and ended up with tummyches again. That night he did throw up.So, I guess that even with good sed rate we have to watch what they eat. I also tell him to chew his food better and to slow down when he eats(he usually doesn't do any of those). Lately, he is hungry a lot and eats a lot,I hope he will have a growthspurt,because his little brother is passing him up and it stings. After his last tummyache I said something like " I wish it was me who had this problem and not you" ,his answer was "mom, there's no way you could take that kind of pain". I guess I'm a wimp.
 
Max's Mom,
Its nice to be able to compare isn't it. It calms what otherwise might be a worry. I hope Brian's Sed rate is low when we go mid-May. I think he needs to cut back on the sweets. He sneaks it by! I've told him he needs to take control too, not just rely on me to police him! When he began to feel better he got a bit loose in his snack decisions.
Max's brother might be passing him size wise, but it sounds like Max is confident in his strength! :)
 
I can't add much at all to the encouragement and advice above, but let me allow to affirm that hooray, what a great virtual meeting place for those of us in similar or somewhat similar circumstances!

Also, if you have time to check out blogs to read up on individuals' accounts with IBD. You will find that there are so many varying experiences, and some might hit home more than others....
 

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