Very New Mom to Teen Daughter with Crohn's

[jaems]

Good evening everyone,

This is my first time to this board, and I'm so thankful to have found it! April 7th my 15 year old daughter was admitted into the ER for pain in what we thought was her tailbone. Turned out, through CT Scan, she had a baseball sized abscess in the wall of her rectum. She spent the next five days in the hospital having surgery on the abscess, having a drain from the abscess, and taking antibiotics. Her WBC count was 17,500. She was able to come home after that, but with a PICC line to administer the antibiotics. She felt much better after that, except for the diarrhea. We thought that was a side effect from the antibiotics. One, her WBC returned to normal, she was rushed through the referral process to see a GI. The GI rushed a upper endoscopy and colonoscopy two days later. Well, we just got the call from him with the biopsy report. Although there were definite signs, she did show excess bile in her stomach, inflammation in the terminal ileum, and severe inflammation of the rectum. This is all so overwhelming, as it has all happened so fast.

Today I had to pick up her prescriptions. Here is what she's taking:

-- Canasa Suppositories
-- Budesonide
-- Zopran

I'm trying to read EVERYTHING I can on Crohn's, but I'm having a hard time allowing it all to sink in. I HATE medications, and I'm scared to death of the thought of my daughter being on medication for a lifetime. If you have any words of wisdom, or have a similar story to my daughters, I'd love to hear from you. How do you all talk to your kids about it? Just how serious is this anyway? I look forward to "meeting" you all, supporting y'all, and picking your brains. Thank you for your time.

Jaems

 

[ajalily1]

Welcome,welcome,welcome. You have found a wonderful supportive place to bounce off thoughts and feelings, and most importantly to get some support from others that are going through this.

I am very sorry for this news you have received. It must be very scary to have your daughter be so sick and feel so hopeless. I too, have crohns and have had abscesses, and years and years of struggles,pain, and just of feeling of hopelessness at times. It's important to learn as much as you can about this disease. I have found that just being in the thick of it is where I have gained most of my knowledge.

Everyone is different when it comes to meds, and symptoms. But when I was first diagnosed I was really bad at taking my medication and i would skip a dose here and there and that put me on a fast track to surgery. Now I am on twice monthly humira shots and am starting to get my life back.

My advice to you and your daughter is to make sure she takes her medications to get the inflammation and flares under control. If she's anything like me I hate to take pills but it is very important to take it as prescribed by her doc.

I'm probably not much help, but I just wanted to reach out to you and let you know that we are here to support you. Please keep us updated on her journey.

 

[Hope345]

Jaems,

Welcome to the forum and I am so sorry to hear about all that your daughter has been through.
My daughter is 14 and has Crohns colitis.

I agree with finding the right meds that work for your daughter and taking them faithfully. remicade has been the best for our daughter. It wasnt until we doubled her dose and after 7-8 infusions she is symptom free.

All the information you find will be somewhat overwhelming and each person/child will be different in how they respond to diet, medications and symptoms.

Please feel free to private message me and we are all here to give you all the support you need.

 

[Dexky]

Welcome Jaems! Be prepared, the meds will likely get much more frightening. The good news is the docs will closely follow your girl's progress with bloodworks especially when beginning any new meds. Good luck!!

 

[Tesscorm]

Hi Jaems,

It is quite overwhelming when you first receive the diagnosis. Try to learn as much as you can but try to go one day at a time as well. This is a wonderful forum - tons of information and fantastic members who offer their knowledge and support!

As was said above, crohns affects everyone differently - the location of the disease, symptoms, response to medication, etc. The trial and error can be quite frustrating but the advice and support here can be invaluable.

Unfortunately, meds are very much a part of this disease and they can be scary. As you learn more about the medications, try to keep some perspective when reading about the risks... untreated or undertreated crohns will also bring risks. Unfortunately, there just aren't many great choices , however, many do have great successes when treated with the right meds! And, while the meds do bring risks, very often the risks are rare! There are some who have tried diets (SCD, Paleo, and others) with some success. I, personally, do not believe diet can control crohns but do believe it can help control symptoms. However, this is only my opinion and, given my son's pickiness, diet was not something I've tried to use as treatment.

My son was 16 when diagnosed. He was always very open about his illness and I've always discussed all that I've learned with him. I think you'll have to gauge your daughter's reaction to her symptoms, her diagnosis and let her guide you as to how much info, how soon, how often... Although, as others said above, she must understand it is important to be consistent with her treatment.

Feel free to ask questions and to share concerns... we've all had our worries and the support I've received from my friends here has been invaluable!

I've added a link to our Success stories thread... it does help to know that things will get better! :ghug:

http://www.crohnsforum.com/showthread.php?t=27079

 

[jaems]

Thank you all for the kind words, and advice. I am very excited to have found this forum! It's been a great source of information, along with a good sense of perspective. Thank you again.

Jaems

 

[MomRocksOut]

So sorry you're dealing with this, but you found a place where others understand you.

Remicade put my son (diagnosed at 11) in remission by the 3rd infusion and we are following the SCD diet. The diet has done wonders for all of our health - been healthy all school year!

Are you seeing doctors at Primary Childrens? We go for Remicade there and our doctor has an office there.



~ Son diagnosed June 2012 w/Crohn's at age 11

 

[EthanClark]

Welcome-Sorry you had to find your way here, but it is a great place. We live in Utah as well and my 3 year old son has crohn's. We take him to Primary Children's, it is a wonderful place. If you don't mind me asking "Who treats your son?" We are managing Clark's disease right now with EN. He had a G tube placed and is strictly on formula and no foods. This has helped him so much. We haven't had to use any other drugs yet besides steroids in the beginning before we started the EN treatment. This seems to work for our son so we will continue and hope that this will keep him in remission. Please let me know if you have any questions. Good Luck :ghug:

 

[imaboveitall]

Violet is also aged 15 and has been dealing with Crohn's for five years, so feel free to PM me if you like.

Your girl's story is another example as is V's case, of insidious disease progressing without outward signs.
So scary. V's doc has warned us of and cited cases JUST like your girl's of kids who present in ER needing emergent surgery for abscess or perforation.

The treatment options are worth investigating; there are threads galore on here on all of them. Enough to drive yourself crazy for sure if you are obsessive as I am.
Any questions just ask!

Hugs,
Julie

 

[CarolinAlaska]

Hi JAEMS, sorry I had to meet you here, but you're in a good place. My daughter was diagnosed in January with Crohn's. It is a rocky road, but manageable if you take it one step at a time and just deal with the terrain in front of you at the moment and don't worry about what the path may lead to down the line. Sometimes the path leads to a good place, and I hope that is where your daughter is going.

 

[Sascot]

Sorry to hear about your daughter - that's alot to go through. I agree this forum has been fantastic - the support and info is irreplaceable. Unfortunately Crohn's is so different for every person, it's hard to know what to do, but whatever you try, there is usually someone here who has been there and can give advice. Hope the new meds help - I don't like the meds either and fought for a good few months not to give my son anything, but in the end you don't want damage going on inside that could have been avoided. My son is now on the 6mp and so far no side effects apart from tiredness.

 

[ChampsMom]

Hi Jaems...

Welcome to the forum... so glad you found this family - yes, family! There is tons of information to be found here, but sometimes the best part is finding at least one other person that "gets it"!

My son was 13 when diagnosed, now 16 (touching wood) in remission, but his arrival to the disease is much different (so many ways to get to the same diagnoses - it's crazy!)...

Will keep you all in my prayers. I'm not from Utah, but have lots of connections there... My son is hoping to play Ice Hockey for BYU - smile...

God bless...

 

[jaems]

My husband is in the Air Force, and we are stationed at Hill AFB around Layton, UT. Dr. Mizell at Cottonwood Pediatric Gastroenterology. I like him enough, I guess, but I don't really have anything or anyone to compare him to. We're going to look into visiting a naturopath as well. I figured, it couldn't hurt. Thank you for the info. I am curious about Remicade, as I see a lot of kids are on this.

So sorry you're dealing with this, but you found a place where others understand you.

Remicade put my son (diagnosed at 11) in remission by the 3rd infusion and we are following the SCD diet. The diet has done wonders for all of our health - been healthy all school year!

Are you seeing doctors at Primary Childrens? We go for Remicade there and our doctor has an office there.



~ Son diagnosed June 2012 w/Crohn's at age 11