New Diagnosis of UC in my 12 year old

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friskymccarty
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/14/2008 9:34 PM (GMT -6)   
Tonight I need to give Rowasa to my 12 year old. Her primary concerns are the severe abdominal pain she's been having and the major abdominal distention. 
Questions: Any tips for giving Rowasa enema to kids?
               Does anyone have experience with abdominal distention decreasing with Lialda and Rowasa?
 
 
Thanks!

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 4/15/2008 6:39 AM (GMT -6)   
Tips for Rowasa.......shake it, push out all the air and then administer it. If you dont push out all the air, your child will have a hard time retaining it. Don't be discouraged if he/she can't keep it in for a long time....I have trouble with that and I was twice her/his age when I had to start taking it. Also, use some vaseline to lubricate the area, and I would really try to let him/her do it themselves.....you have to have some dignity with this disease, and I can't think of anything mor horrifying than letting my mom stick something up my butt. (But me and my mom don't have a great relationship!). He/she will want to lay on her/his left side for about an hour to let the medicine absorb. I always do it in front of the TV!!
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/15/2008 6:45 AM (GMT -6)   
Frisky, I'm so sorry no one was around to help you yesterday! How did things go?

Welcome to HealingWell, although I'm so sorry your daughter has UC. Do you know how much of her colon is involved? Does she usually have diarrhea or constipation? What symptoms has she had. We do have several parents here of children who have UC. I'm sure they'll have more to share about coping with this.

Take some time to browse the resource links posted on this page. Educating yourself about UC is the first step in becoming a great advocate for your daughter. You may also want to visit this site, which is specifically for families of children with IBD:

http://www.dragonpack.com/ibdsupport/parents/

Once again, welcome to the forum, and I hope your daughter is feeling better soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 4/15/2008 6:47 AM (GMT -6)   
Yes, take Lemonheads advice! She helped me a few weeks ago when I first started taking the Rowasa and was having a hard time. It never occured to me to push all of the air out first (duh, why don't they put that on the packaging...). She'll still have a LOT of gas - at least I do when taking Rowasa, and will need to rush to the bathroom when her feet hit the floor in the morning. That's normal.

Sending prayers your way for you and your daughter. I read all of these posts from parents and just can't imagine how difficult it must be for you. I know this is a genetic disease so I'll have to keep an eye on my 3 young boys as well.
Renee
Diagnosed w/ UC in August 2007
Current status: Flare

4 Lialda/day, Tapering off Prednisone (10mg), Rowasa at night, Wellbutrin XL


friskymccarty
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/15/2008 8:00 AM (GMT -6)   

Thank you for your responses! I really appreciate it.

I will try the tips for the Rowasa...I'm Tivo'ing shows for her to watch now in anticipation of tonight. I appreciate your comments about the necessity of dignitiy with this and I am going to have her to the enemas herself. I'm going to get her online and in touch with some other kids. She's a great kid but was fairly freaked out by the enema thing. This morning she is facing three Lialda pills,too. We will see you it goes.

I trulyappreciate the support here and both of your help.


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 4/15/2008 11:13 AM (GMT -6)   
My daughter is 14 and just diagnosed in Jan. We may follow a path or two the same way. She inserted the enemas herself after the first one that I helped her with. She had a hard time holding them in as she was flaring. She was not one of the Rowasa success stories, unfortunately. It brought on intense symptoms, and after two different trials, we gave them up. Many, many are helped greatly by these, for left sided UC, but the longer she kept them in, the more bm's she had. I have heard that the generic version is more difficult...tough to get all the air and medicine out, as the bottle is less flexible. Perhaps that didn't help.
We just finished our second visit to the hospital, and are making nice progress. Back at school, eating low residue foods, stable weight and down to 30 mg of Prednizone( along with 6 asacol,6mp, and a host of supplements.) It's a journey. Stay on top of it, get a good doc with LOTS of exposure to this, and get copies of everything. It can turn on a dime, and you need to be prepared. She has shared her disease with close friends, and it was a good decision. Her appearance changed on the steroids, and kids are so superficial...it helped to have her good girlfriends tell the general population that her change was due to medicine, not stuffing her face.
Good luck, I am around if i can help.
k
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Rowasa, Asacol, Prednizone 50mg, major flare, Hosp. @U of C, Comers. IV steroid, no food, then low residue, home.
Now, began mp6, beginning taper of Pred, now 45mg, horrible acne, moon face, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/15/2008 12:46 PM (GMT -6)   
Sorry to hear your daughter has UC. When I used to take Rowasas, I would lay on my left side and push the bottle slow and steady and take deep breaths. Then I would lay completely still and my dh would put covers over me and turn off the light and I would go to sleep. If I would move around at all, I would have to run to the bathroom. Also, they get easier to retain as you keep using them.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 4/15/2008 1:58 PM (GMT -6)   
it helped me to angle it a bit toward my uterus when insterting, I had some trouble just pushing it straight up. Just tell her to go slow and push slowly finding the best angle. It's got to be very hard for her to deal with I remember getting my period near her age and how mortified I was at that.

Hard to remember, but I keep telling myself, everyone poops!

Hope she is well soon! Rowasa's helped me greatly my first flare. Also, the first few times will be hard to do, and she may not get a chance to absorb much at all, don't get discouraged though, even us adults have a hard time at first.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


friskymccarty
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/15/2008 4:22 PM (GMT -6)   

Katmom

Thank you for your advice and story. I can't tell you how much I appreciate it. This is all pretty scary but I'm trying to act very OK in front of my daughter. The advice sounds really right.

I I really related to the line "fearful of the future"...as that is exactly how I feel now.

 

F


friskymccarty
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/15/2008 4:31 PM (GMT -6)   

Judilyn

Thank you for your concern and warm response. She has had weeks of blood and pain and finally the colonoscopy showed left sided proctitis. Has really bad mid abdominal pain @ 30 minutes after eating (which I don't get as her dz is limited to the bottom of her colon I guess).

 

Anyways, the tips re the Rowasa are so helpful.

Thank goodness I found this site last night (I literally just didn't know what to do and was Googling and found it) Thank you.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/15/2008 4:45 PM (GMT -6)   
It may help to tell her to angle the enema tip toward her belly button, since she may not know exactly where her uterus is. If she has trouble retaining the enema, try giving her half the liquid, then increase as she tolerates. And use lots of lubricant on the tip to help it slide in easily.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 4/15/2008 5:23 PM (GMT -6)   

friskymccarthy,

I am also sorry to hear about your daughter. It makes me especially angry hearing of children getting this disease. You said she gets pains after eating. What would her typical diet include for a day? I found that changing my diet helped tremendously. And I sure loved the Rowasa when I was sick. I'm sure as you peruse these postings that you may get some ideas to try to help your daughter. The support here is "second to none"! You have found the right place. Best to you both.

Kim


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 4/16/2008 4:32 AM (GMT -6)   
friskymcarty, welcome! I have two kids with UC - son 16, dx at 10 and daughter 9, dx this past summer. Although we've never done the enemas, we have done canasa suppositories and proctofoam. Mostly, I just wanted to send you a {{{{{Hug}}}}} to let you know I understand your fears and worries about the future for your child. Please do check out the dragonpack link above as it is such an awesome source of comfort and information. Lots of parents with kids the age of your daughter (as if being 12 wasn't enough - I also have a daughter who doesn't have UC, but just turned 13 - what a fun age - NOT!!)

Again, welcome and I am so sorry about your daughter's dx.
Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 4/16/2008 6:50 AM (GMT -6)   
Don't be fearful of the future (I know, easy for me to say), but there are a lot of people who have this dx and live very full, productive, happy lives. My biggest concern was could I have kids......now I have 2. I have a job, and family and live a pretty normal life. People only know I have this dx because I tell them. There will be times she feels crummy and times she feels great. She will learn to listen to her body and adjust her life accordingly. This dx (as awful as it is) is not a death sentence. It is a pain in the butt. But she will get better and she will go on to lead a full life. It just may make her a more compassionate person. (I know...what a way to learn a lesson!)
Also, how is she doing with the enemas? I took a foam enema early in my dx called cortifoam and that was great. Never felt better, easy to retain, easy to use. I am not sure...it may be a steroid, and your dr may not want her take it because of that, but worth looking in to. Maybe others know more about that.
Good luck and my thoughts and prayers are with you. And it WILL be ok. it will.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/16/2008 7:16 AM (GMT -6)   
Cortifoam is a steroid medication, you're right, lemonhead. I'd try to keep her off steroids if she can be relieved by other medications. They have some unpleasant side effects.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.

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