Feeling so blue...How to live with DD's chronic illness?

[Anonymous]

Anonymous wrote:So grateful for the helpful responses.. To the person that asked: its not encopresis. But I appreciate the desire to put us in touch with specialists.

That was me. Sorry if you've already had x-rays and other tests, but encopresis doesn't always mean soiling. My daughter never soiled, but her nerves and muscles are disordered in the same way from withholding and it's all part of a larger continuum.

And for the other PP who asked, the nerve and muscle function supposedly return to normal eventually if the bowels are emptied daily (by laxatives or enemas) and the kid re-learns how to use them. We're still on that path for now!

[Anonymous]

Anonymous wrote:OP, your daughter has a chronic medical condition. It may be lifelong, but every medical condition has remissions and a course that includes good and bad phases. She is in a particularly rough phase right now. That's very hard. I'm so sorry.

I agree with the posters who say that, as close as your kids are, the younger child must have a social life that does not include the older child. Send younger child to camp still if you can, or find an activity. This is really vital.

It's not selfish to feel that the pleasure has been sucked out of your life. That's a natural feeling, not a selfish feeling. Your life has fundamentally changed. But there are vacations to be taken and you will take vacations as a family. Renting an apartment at the beach for a week sounds like an option.

It seems to me that you would benefit from joining some Crohn's Disease Support Groups. Your daughter may not have been diagnosed with Crohn's but many of the tips for how to live in the world with bowel urgency and how to vacation are going to apply. One thing I have learned is to join a wider network of support. If there is good support for one aspect of my child's condition in another support community, I go there. You should do the same.

Many children don't have a diagnosis. It's a hard place to be but it's more common than you would think. It's probably contributing to your depression and keeping you in that limbo place. Ignore the posters who are quizzing you on her condition.

I was also going to suggest that you and your daughter join an IBD support group, because those with UC and Crohns face very similar issues. I was diagnosed with Crohn's in my teens and I relate to how your daughter feels. I went through a period where I did not want to participate in anything because I was so worried that it would be disrupted by an episode. My parents indulged it because I think they felt the same way (out of protectiveness of me). Joining a support group was great - I felt understood and free to share my worries, and I received lots of support and tips for how to navigate and maintain a regular life. It was so liberating and while my disease is auto-immune, like all body functions it is influenced by stress, so relieving some of my stress did slightly help the condition as well.

As an adult, I still am a member of the Crohns and Colitis Foundation, and I know they facilitate support groups, online and in person, and camps, and teen workshops, etc. Your daighter's GI may also know of some for tweens/teens at area hospitals.

GL.

[Anonymous]

I'm the PP and I just read the rest of the responses. A lot of good advice on this thread which you seem to be taking to heart - that is great. I just wanted you to know that I (the poster with Crohns, which I know is not what your daughter has), eventually DID go again to camp, participate in school activities, go away to college. It just took time, to learn our "new normal," learn what worked/didn't work, learn makeshift solutions when out of the home, etc - also time to accept that I wasn't going to be doing things in the same way or on the same timetable as I once assumed. But once I saw I could still do most the things I wanted to do, with appropriate modifications, I began to do more and more. For a long time you are focused on the diagnosis and how to manage the illness. Eventually you start to focus on how to manage your lives. Sounds like that is where you are now. Again GL, you can do it.

[Anonymous]

Go to an allergist- soon. My niece had a severe gluten and tree nut allergy . Introduced rice based food and it made a big difference

[Anonymous]

Anonymous wrote:Therapists are fine but I think families who live with similar situations have real solutions, perhaps? When I talk to my therapist or when my DD talks to hers, we both come away with, "Person is great but actually has no clue what we live with on a day to day, hour to hour basis. No clue."

This was my experience with therapists at the beginning. PPs suggesting support groups for parents/teens with your daughter's condition (or a similar enough one) have a great idea. Once I was more in the swing of things, therapy was more useful. Also, find a really good therapist. They don't have to understand exactly what you're going through, they just have to be well trained at helping you through difficult things. I could say "I would like to deal with my anxiety about ____." which is something a therapist would know how to deal with, even if they have no real idea what ____ is.

[Anonymous]

Anonymous wrote:I think this is the correct forum for posting this question. DD is 12, and out of the blue, developed quite severe GI issues 3 years ago. The issues are terrible and have become chronic it seems: intractable constipation (i.e., she cannot go at all on her own), abdominal pain, crazy urgency. She was totally healthy before. She is a tough kid but all of this has taken a huge toll on her. She is super anxious about social situations now and is petrified of anyone finding out about her GI difficulties. All normal for her age, I think, and because the issues are genuinely on the embarassing side for a tween. As a family, we are so restricted by her condition. The practical matters - always making sure she has vegetables, fruits, high fiber, no dairy - means that there is no such thing as a icecream stop or an occasional pizza meal. Our younger kid is close in age and a real playmate. So neither are doing camps this summer so that there is company for DD. But poor DD spends a lot of her days in the bathroom because of the urgency - so no one gets to do anything on those days. It feels cruel to get on with our lives, get the younger child into camps, go on family vacations (how to even do this?). We are struggling daily to help figure out her situation. This takes up time, energy, medical visits galore. I am not asking for help here on the medical side but really how to handle this as a family. It feels hopeless, no end in sight. And I am afraid the truth is that when there is a chronic situation then the whole family pays the price. Right? I just feel terrible that we can't help our child who is suffering horribly. I feel terrible that our other child's life has become so constrained. I feel sorry for myself too, as selfish as that sounds, that there is no pleasure left in life. I took a break from the kids today, shut myself up in my room and slept a lot of the day. DH was fine with handling the kids all day. But I felt like a stereotypical depressed person. The kids were asking what had happened to me and why I was so sad. Thanks for reading.

Is it in your budget to do 1/2 day camps for the younger DD? It gets her out of the house in the morning and some time to do her own thing, but still plenty of time to spend with her older sister. Not sure where you are located but I bet there are still plenty of good options for 1/2 day tennis, art, etc camps. You can post here or on the camps forum if you would want any ideas.

[Anonymous]

OP, I'm so sorry. My daughter was 2 when her neurological symptoms first appeared. It's treatable, but life-long and definitely chronic.And it upended our lives in similar ways to what you face.

I, too, had an almost delayed response to the grief three years into it, and the deep mourning stage happened then for me. It sounds like you may be there now, too.

What helped: time, and support from my "tribe". You must, must, must fight isolation as best you can. Every member of your family needs perspective and you only get that by getting out of your current environment and small circle of people. And I KNOW how tough that is, but it can be done on some days in small doses.

So...(1) Join a support group - one for you and one for your daughter. Something online (facebook, etc). You will be amazed at how much it helps and at how much information flows between the members. These groups will also help you and your daughter figure out how to live with the condition day to day; (2) The younger sibling should absolutely have her own camp and alone time with you and your husband. And when school starts, I'd argue that she needs to be in a lot of different activities, to minimize the time she's "stuck" at home. And when you all are there, try very hard to accept your new normal. That means to talk to the younger girl, in age-appropriate language, about what's going on and what it sometimes means to your schedule.Don't make it a big deal.

On that point, I also believe that at the heart of a family who manages to carve out a happy life when faced with chronic disease is that they redefine what "family" means. The sooner you can accept that, the easier it will be to come up with unique and workable solutions for your family.

[Anonymous]

One repeated suggestion has been to find a support group. So, here is the thing. We have a clear set of medical issues accepted by doctors but not a diagnosis per se. What is the best way to find a support group? Online searches? Are online groups useful for kids or do they have to be a group that they meet with in person?

I have found a 1/2 day camp tonight, and have signed up both the kids. If older DD cannot go some days, thats OK. Younger DD will have something fun daily. So we have a plan for this week at least. Now for that vacation...

[Anonymous]

I would say find one where her symptoms are the most similar - obviously GI issues - maybe a Crohn's group? Perhaps browse the various boards at Healing Well online to figure this out. That's been a great resource/support source for me. Otherwise, try and find one for chronic illnesses?

[Anonymous]

OP, check out different support groups for GI issues -- IBD, Crohn's, chronic constipation, and encopresis. There are probably several more. We are conditioned to believe that medical issues unfold like a hour-long episode of "House" -- with the troubling onset, the period of suffering, and the diagnosis and therapeutic conclusion. I would say that fully half the chronic conditions that children on this board suffer from do not follow any clear diagnostic model and even those that do fall into loose categories like "genetic mutation" or mitochondrial disorder. Many children also have more than one diagnosis.

Get support where you can. If your child's GI issues involve anxiety, and it sounds like they do, get support for that from anxiety groups. Get practical tips on managing GI issues from the Crohns/IBD/encopresis groups.

Think outside the box and be creative. Have you tried Facebook? It has a wealth of support groups for almost every condition. I would just start joining, and you will get a sense of which ones are active and helpful. You can read old posts; you don't have to out yourself or broadcast personal facts.

[Anonymous]

Anonymous wrote:I would say find one where her symptoms are the most similar - obviously GI issues - maybe a Crohn's group? Perhaps browse the various boards at Healing Well online to figure this out. That's been a great resource/support source for me. Otherwise, try and find one for chronic illnesses?

Inspire.com also has a lot of communities that you could browse through.

I hear you, though, OP. Without a definitive diagnosis it is more challenging to find a community that seems to fit, especially one focused more on pediatric/adolescent cases.

That said, many of the communities will nonetheless be especially welcoming to someone whose child has problems. Check the traffic of whatever community you choose to make sure it is reasonably active.

Here is a list of Inspire's digestive disorders support communities.

https://www.inspire.com/categories/digestive-system-disorders/

[Anonymous]

Anonymous wrote:One repeated suggestion has been to find a support group. So, here is the thing. We have a clear set of medical issues accepted by doctors but not a diagnosis per se. What is the best way to find a support group? Online searches? Are online groups useful for kids or do they have to be a group that they meet with in person?

I have found a 1/2 day camp tonight, and have signed up both the kids. If older DD cannot go some days, thats OK. Younger DD will have something fun daily. So we have a plan for this week at least. Now for that vacation...

Can you ask your DDs doctor what diagnoses would be the nearest to the symptoms that your daughter is experiencing? Or choose the symptom that is most difficult for your family to manage (urgency?) and ask what diseases would also experience that symptom?

[Anonymous]

I copied the following from my daughter's Facebook page. Her student ( middle school) has been speaking out about bowel issues. Even if DD does not have these diseases, she might want to reach out to Zoe, a very brave and articulate young woman.

Please click below to donate or walk to support my brave student, Zoe, who is this year's Crohn's and Colitis Foundation's National Capital Take Steps Pediatric Hero. She spoke at the kick off party yesterday at Nat's Park and made me so proud. It's heroic enough to battle a chronic condition as a child but by speaking so openly about it to raise awareness she demonstrates self-empowerment that is truly inspirational. Help her reach her goal. She is so close!
National Capital Area Take Steps for Crohn's & Colitis
National Capital Area Take Steps for Crohn's & Colitis takes place at Washington Monument Grounds on 6/11/2016. Take Steps to find a cure for digestive diseases! Join me by registering or donating.
ONLINE.CCFA.ORG

[Anonymous]

Here is her link:

Copy and paste this link into your browser to read her story: http://online.ccfa.org/site/TR/Walk/General?pg=informational&fr_id=6042&type=fr_informational&sid=4062

[Anonymous]

Please read the stories from the above link. They may help you and DD.