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NurseAlex
Hello friends,

I haven't been around much lately but as many parents on this site have experienced, I received some of the worst news today that an IBD sufferer/J-poucher/parent in general can receive. After a month of on and off rectal bleeding, my 13 year old daughter Kylie, had a colonoscopy this morning that revealed mild to moderate IBD, that resembles Crohns more than Ulcerative Colitis. We won't know for sure until the biopsies, labs, etc., come back exactly what it is but our GI feels strongly that it is Crohns.

Just typing these words is sending me into hysterics. This has been one of the biggest fears I've ever had...to pass this awful disease onto my children. I cannot imagine my daughter going through this. I swear, if it's not one thing it's another. God must have a whole lot of faith in me that I can handle things because each of my three children have some sort of health or behavioral issue. My oldest son Robby, who many people on this site may remember had a Pituitary Adenoma Brain tumor at 14, had surgery, radiation and has a long history of medical issues related to that as well as suffering with Bipolar disorder for half his life. My 5 year old son William has been having sensory processing and behavior issues at school and home that we have been dealing with for over a year.

Until today, my Kylie has been my one "normal" child. She excels at everything she does. She's a talented singer and competitive dancer, spending 15-20+ hours at the studio every week while managing to keep close to a 4.0GPA at school. And she does this happily with ease. Dancing and performing in general is her life. She LOVES it. She's my one child who I've never had to worry about. To have this happen now is really testing my limits and my faith.

Our GI doctor says there are so many "new", less harsh treatments nowadays that most of her IBD patients live long, happy, full lives. In her 9 years of practice, she hasn't lost a colon yet. She takes care of j-pouchers like me but she has been able to treat her other patients to where they are well managed without the need for surgery. I pray that is the case with Kylie.

I guess I just needed to come here to share where people truly understand. I need to know...Is there hope for my girl to live a normal life or is she doomed to a life of suffering like me? Does anyone have experience with a child who had Crohns or UC that have been well managed and have been pretty "normal"? Kylie wants to be on Broadway someday...Is that all just a pipe dream now? I am trying so hard to be positive, to emanate healing vibes but this has just crushed me. I feel like I have been punched in the heart and the wind has been taken out of me.

My head is spinning right now...Can anyone offer any words of encouragement or is my daughter destined to a life full of pain and suffering? This hurts WAY MORE than ANYTHING I experienced myself personally. I would give anything in the world to take this from her and suffer for her...

I don't know what I am looking for here really...I guess I just wanted to get this out there.

Thanks for listening,
Alex aka Kylie's mom

Replies sorted oldest to newest

mgmt10mgmt10Member
I just wanted to say I'm sorry about your daughter. That just really sucks. I worry a lot for my boys since UC runs in my family big time.

My niece has CD. She has always been able to control it very well. It seems from the people I've talked to with UC and CD it's always the UC people that suffer the worst. Maybe the meds work better for CD? I don't know...it seems that way.

Good luck with everything for her. And remember, just because she has this dx doesn't me she'll have to go down the same road you traveled. Best to you both.
mgmt10
Jan DollarJan DollarModerator, RN, retired
I can't speak for you or your daughter, but you cannot project your outcome onto her. I had severe pancolitis, yet was able to sustain a remission for over 20 years, finish high school, college, years of working as a nurse, and raise a family before my colon refused to respond to treatment. Even after the colectomy, I feel normal and live a full life.

My youngest son also developed pancolitis, requiring hospitalization. He responded quickly to treatment and has been in remission ever since. That was about 5 years ago. It did not stop him from doing what he wanted.

My oldest son may also have UC. Apparently he had mild colitis diagnosed during a sigmoidoscopy about a month ago and he was scheduled for a colonoscopy. He has not told me the results and I am trying hard to respect his privacy. Still, he has been working full time with a job he loves and is now engaged.

So, yes, I think your daughter has a chance at a normal life. Of course, these are not things we wish upon our kids, but hopefully we have equipped them with what they need to deal with it.

Jan Smiler
Jan Dollar
Scott FScott FMember
Lots of cases of IBD cause little or no trouble after the initial issues/diagnosis and even surgery. Others are very well managed with medication. Remember that just about everyone on this board is in the camp that needed more help than meds could provide. And besides, your daughter has the most important advantage of all: you.
Scott F
NurseAlexNurseAlexMember
Thank you all so much!!! I started to go down a dark road for a moment there...blaming myself, feeling guilty, feeling overcome with fear and sadness. I even got mad. Thankfully My daughter and I have people in our lives who love and support us...including you all.

It's refreshing to hear others have had good outcomes. My/our GI doc is pretty awesome and I believe she was put in my life 3 years ago by the grace of God, not only for me but also for my Kylie.

Kylie is a strong and amazing young lady but she's still my baby. She's very intuitive so her dad (who she was with tonight per divorce agreement) talked to her about it. I have her this weekend, so I can help her through what we know so far. She said she was ok but crawled into bed with him to snuggle and fell asleep for the first time in years. Obviously she needs extra support right now despite the tough exterior.

I HAVE to believe Kylie will be ok and will manage well on the meds and any diet changes we make. She's such an active girl and dedicated dancer, I feel she will work hard to overcome this. Even though she was not allowed to dance today, she insisted on going into the studio to watch classes this evening. She's a trooper! I have been the wreck today, not her. Hearing the positive outcomes really puts me at ease.

Jan-I think back to my journey and I made it through 6 years in the Army, having two children, going through nursing school and working a few months as a nurse before my UC/proctitis became intolerable and needed surgery.

It's weird hearing that UC may be the worse diagnosis now...I had always thought Crohns was the one you didn't want to have if you had a choice. Maybe the treatments are truly better like Dr. Covelli said...I'm praying it is true for Kylie.

Thanks again and I'll be on the site more now I'm sure. I'll keep you posted and thank you for your continued support!

Alex
NurseAlex
Last edited by NurseAlex
BL Bunny loveMember
Hi! I can totally understand what you are going through. No one ever wants this for their child. My 11 year old daughter was diagnosed with UC and only made it a year before her colon had to come out. She too is a dancer and has dreams of Broadway. But I have to say at 1 year post take down she has not let the disease define who she is. She danced on stage with her ostomy and bag, was back at dance 4 weeks after all 3 surgeries. I think it's all in the attitude and especially in the one as a parent you can share! I keep telling her how strong she is! It's not to say she doesn't have issues still (has the liver diseas psc as well, so is has a few pouch issues)but we try hard to not let that rule our lives! I hope we can see your daughter one day singing and dancing in the bright lights! Smiler
BL
clz81clz81Member
On a positive note, I was diagnosed with UC when I was 14. I let the disease progress way too long as I was embarrassed and hid it from everyone until I was down to about 90lbs. Once I started treatment, I started to feel so much better and began putting on weight quickly. After a few months, I was entirely back to normal. I only took a low maintenance dose of Sulfasalazine or Asacol with biannual scopes, and was a totally normal, healthy person for about 15 years. Other than remembering to take my meds, I would never know I had a disease. One flare in college that I took care of with an increase in meds for a few weeks, but that was it. The only reason I even have my J-pouch was due to dysplasia, which didn't show up til I was 28. Long story short, other than a few months of ugly (which was my fault as I didn't ask for help), my childhood and young adult life was not affected at all by my disease. It doesn't have to be a horror story. Many of us have them, but there are lots of positive stories out there as well!
clz81
B beckysmomMember
First, your daughter sounds terrific! I can only guess that she will continue following her dreams, no matter what health "hiccups" come her way. Hopefully she will do well and it will be mild.

My daughter was diagnosed at the age of 5 so she never really remembers being "well". With all her health issues she has continued on with her education, and is now in her 2nd year of a PhD program. It is her dream to be a professor, and in 3 more years she will be done and looking for a job in her field.

Your daughter has a strong, knowledgeable Mom behind her!
B
NurseAlexNurseAlexMember
Bunny Love-Wow, that is incredible! How is that even possible? Did she just not wear a two piece costume or have a lot of floor work for a while? I can't imagine Kylie dancing with an ostomy bag...although I swam and did pretty much anything I wanted when I had mine, so I suppose anything is possible. What an inspirational story. I pray we can tackle this head on and that Kylie will heal, avoiding the need for surgery. I'm so sorry that happened to your daughter but very happy things are working out!

Jan-I had no idea your kids had IBD...not sure how I've missed that. I'm so sorry. I now know how it feels and hearing your positivity and perseverance is very comforting. Thank you for always being here. You have helped me so much throughout the years!

I suppose the only way we can know for sure that we won't pass anything on to our children is to not have children in the first place...and I wouldn't trade them for anything in the world. It's just heartbreaking to see them faced with difficulties in their lives. I plan to focus on sending out positive energy and doing what I can to support and be there for Kylie...at least she has someone who truly understands what she is going through. Even though I wish nothing more than to have her not go through this!
NurseAlex
Jan DollarJan DollarModerator, RN, retired
Alex, as you've seen with your other kids, life is full of challenges. People you see everyday have loads of them, but they just do not focus their lives on them or let them define them. Sure, there are times when these challenges take over, but it definitely is helpful to have someone around who can help them cope and move on. It sounds like Kylie inherited a lot of strength and resolve from her mom and I have a feeling she will do great, even if her dreams change.

I cannot imagine a world without my boys, so I do not feel guilty at all!

Jan Smiler
Jan Dollar
NurseAlexNurseAlexMember
Jan-Thank you for the kind words. I have always had a very positive attitude about my disease and I will do my best to pass that onto my Kylie. She is really very resilient and strong.

In regard to a different dream...At 13 years old, she already has a great plan "B". She wants to be a lawyer and possibly get into politics, lol! She wants to go to FSU and be on the "Golden Girl" dance team and go through their law program. With her grades, tenacity and ability to have you believe a blue sky is gray...I have no doubt she would be a GREAT lawyer!! She will do whatever she puts her mind too. We will just keep encouraging her to not let her disease rule her life. It will be okSmiler

Thanks again!
NurseAlex
rachelravenrachelravenMember
My daughter was just diagnosed with an indeterminate or Crohn's colitis early on in February.

I COMPLETELY know what you're going through. She's 11... *I* was 11 with MY first flare. I have gone through EVERY guilt feeling, etc. that I could have had, I had. I didn't eat for a week, I was fraught with worry. She's had arthritis symptoms for about 6 years now, and a perfect storm is what happened, and boom! IBD. She quickly started Humira for both conditions (they now feel the arthritis is IBD linked), and was in clinical remission in 2 days.

While I worry about these meds, I have to focus on quality of life.

I'll probably message you, as I need buddies to talk to who understand this. There's also a Facebook page I'm on, for parents of kids with IBD, that has been helpful to me. Granted, just like here, a lot of the parents on there have kids who are REALLY sick, who are searching for answers... but not all. Some are doing very well.

My daughter's docs said that with Crohn's, they will be more aggressive, because they still feel that UC patients have the choice of a surgical option. Also, if you're doing treatment, the "newest" thoughts are to hit them with biologics and immunomodulators, to induce a remission quickly... my daughter is on Humira and methotrexate, and the thought is the immunomodulating effects of methotrexate help the body not to create antibodies to the Humira.

Here's an article:

http://www.sciencedaily.com/re.../02/140219160412.htm

This article was exactly what her docs at Children's in Pittsburgh said they are doing. I trust they are up on things, as they are in the top 5 GI centers in the nation.

And here's the Facebook group:

https://www.facebook.com/groups/361719397204983/

I hope your little one is doing well. Oh, and another coincidence between you and I? I'm a nurse, too. Smiler My battle with IBD and J pouch surgery is what pushed me to become one.
rachelraven
NurseAlexNurseAlexMember
RachelRaven, thank you soooo much for posting! I just found out yesterday that Kylie too has indeterminate Crohns Colitis!!! Kylie's symptoms so far have been VERY MILD. Thank God! Our GI is taking a slightly less aggressive approach as the disease process looks "mild" and the only symptoms are blood and some constipation (well managed by dulcolax every other day or so. She takes Uceris and Liada right now and knock on wood, after the first week we are seeing improvement. The plan for Kylie is to try this now and have the bleeding gone within a month. She said there may be a time we go to the drugs you mentioned but not yet.

Thank you so very much for sharing your story and the resources! I will check it all out. I will check for you PM and we can definitely start communication!

I went through my worst flare ever during nursing school and two months after I graduated I had my first of a two step j-pouch surgery. I have been having some issues myself over the past few years which led me to Dr. Covelli, our GI Doc. She is an angel on earth and I know God brought her into my life for all these reasons. Would you believe of all the GI docs in the Orlando area, she is the ONLY one with J-Pouch experience? It was a miracle I found her...she just. Happened to leave her card at my Primary Care doctor's office the day before I needed it!

She is in her 40s like me and is so down to earth. I have her cell number and she refers herself to me and Kylie by her first name. she has helped me more than any other doctor I've ever had. She is not a pediatric GI, but agreed to take on my Kylie. She is her youngest patient. The next youngest is 16.

I'll check my PM and respond soon. Thanks again...the site has saved my life and now I can come here for my baby:-)
NurseAlex
PouchomarxPouchomarxMember

what is your GI doctors name and what hospital is she with? my nephew is in his late 20's and has had horrible intestinal issues that have gotten VERY BAD recently. He had labs and scopes last month with no diagnosis and is ER Bound again today. Nobody seems to know whats going on in Orlando area. My sister has crohns and cant find a good doc either

Pouchomarx
ElmerFuddElmerFuddMember

NurseAlex,

Counteracting the guilt... my daughter was dx with UC at 6 1/2 years old, and had j-pouch surgery right before her 8th birthday. When she was 7 she told me this: "Dad, I know why you had colitis. Because God knew that someday you were going to have a daughter with colitis, so you could help her." What a wonderful way kids have of looking at things. Quite the opposite of blame or fault.

She had two surgeries - February and April, and has been living with her j-pouch for 6 years now (she turns 14 in April). She is doing great. She has to take Vitamin D and Zinc supplements, but recently came of sulfasalazine for pouchitis because her inflammation markers looked normal. I have seen her thrive - so it is possible.

That said, she has a classmate with Crohn's who has struggled. Every kid is different. I would say try to keep life as "normal" as you can, and take advantage of things like CCFA's Camp Oasis for kids with IBD. It will help your daughter accept her dx and be able to talk about it - even though she's 14 My daughter went to camp for the first time last year and talked more openly about her disease and j-pouch than ever before. She is going back again this year.

So: no guilt, Mom Your gift of life, and of empathy, way outweighs her dx.

Steve

ElmerFudd
B BuckeyeNateMember

First off, I'm sorry to hear that news. That is  a bummer and coupled with the issues you have with your two children. It also have a 5 year old son with sensory / behavior issues that my wife and I are working through. Also, GI diseases/disorders suck and I would feel awful if any of my kids end up with UC (what I had).

I guess my word of encouragement is that sometimes hardships can be blessings. I have to speak from personal experience, but getting ulcerative colitis, and then having to get the j-pouch was the best thing that ever happened in my life. (I can explain more if you PM me). I say this in no way minimize the difficulties. But rather, trust that the trial can actually be used for good in your daughters life and don't assume she will head down an awful path with it. 

B
PouchomarxPouchomarxMember

What were some of the first signs your younger children had? I have  11 and a 9 year old daughters, and as you can imagine they don't really care to talk about their bathroom habits at all. I ask but they get all embarrassed and don't like to talk about it. I do know that my 11 year old has had constipation since she was a baby. She is always pushing and turning red on the toilet. 3 years ago when she was 8 we had an upper and lower endoscopy done on her and they found nothing wrong or of concern. Just said to give her Miralax every day. We did for awhile and it got better, but as soon as we take her off of it its back to same issues. Now I am reading all kinds of reports that long term use of Miralax is not good?? Of course I panic when one of them starts complaining of a stomach ache at any time, but I keep reminding myself that stomach aches are pretty normal too. My 9 year old has mosaic Turner Syndrome but really no issues except a bicuspic aortic valve that is monitored but on no restrictions or medications. She had bloodwork done due to this that she gets every year and her levels for celiac were really high. We decided against the invasive scope to get biopsy and just took her off gluten. Its been hard but she understands why. She had no symptoms of celiac so we never knew. but ad=fter pretty much being gluten free for over 3 months now, she had brownies at a friends and got stomach ache and diarrhea. Not sure if it was from the gluten cuz she never had issues before or she just ate too much junk at the party..lol

Pouchomarx
EricaLeeJpoucherEricaLeeJpoucherMember

I just now found that there are kids with IBD and I didn't even realize that's possible. I guess I'm just clueless lol. I'm glad to hear that there's good outcomes for some kids. I've never had IBD and got my colon removed due to high chance of colon cancer. I have fap and it caused me to have hundreds of precancerous polyps on my colon. I also have hundreds of polyps on my stomach. I don't know if my GI wants to remove my stomach polyps or not. I do have to get an EGD every six months to keep an eye on my stomach polyps. Anyways, I also don't have kids, but if I did I think I'd pass fap on to them. I probably won't ever have kids because I wouldn't want them to suffer like I am now with my j pouch. I can't really offer much, except that I can pray for your kids. I'm so sorry they have to go through that, but it's good if they can be positive about it. 

EricaLeeJpoucher

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