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

[Anonymous]

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.

[Anonymous]

Poor child! My sympathies, OP, to you and your whole family.
I heartily wish your daughter a speedy resolution to her GI problems. Do the doctors have any idea what's happening?
I'm no expert, but isn't there some severe anxiety going on here? Any trauma suffered 3 years ago? Has she lost significant weight? Does she have other symptoms apart from constipation and pain? If her menses have started, any correlation with her periods? Has stool been sampled for bacterial analysis?

You are probably depressed, and should seek medical help too.

[Anonymous]

The medical issues are real but I don't want to get into further details. Yes she has been tested for everything. DD is anxious because of what she has to live with - the constipation, the urgency, the pain. She sees a psychologist. It is near impossible for a child to go through what she has gone through and for it not have an emotional impact. She is super stressed about her GI issues being outed, but again, this is actually very understandable for a tween. Her anxiety isn't causing the medical issues. I may be depressed though! I really want advice on how to cope, individually and as a family..

[Anonymous]

I'm so sorry, OP. I have a DD who has experienced extreme constipation for several years. We've had a good number of days where we could not leave the house because of it. We only have one child, so the sibling dynamic is not something I have experience with. Watching my DD writhe in pain and struggle so much is the worst, though. I can definitely understand that part. We now follow a gluten and dairy free diet, and we're having success with that, but I also hate that we can't just stop for pizza or an ice cream cone. It feels like nothing can be easy.

I'm afraid I don't have good advice, but I wanted to at least post and say "I get it." I hope others will chime in. All the best to you.

[Anonymous]

Anonymous wrote:The medical issues are real but I don't want to get into further details. Yes she has been tested for everything. DD is anxious because of what she has to live with - the constipation, the urgency, the pain. She sees a psychologist. It is near impossible for a child to go through what she has gone through and for it not have an emotional impact. She is super stressed about her GI issues being outed, but again, this is actually very understandable for a tween. Her anxiety isn't causing the medical issues. I may be depressed though! I really want advice on how to cope, individually and as a family..

Well, first, medical issues are real whether they are psychological or physical. But I understand if you don't want to go into details.
Second, you should perhaps seek out professional help for yourself, or join a support group for parent caregivers of children with chronic illnesses.
Third, your other children should get their own fun time, even if it means not being there to provide company for your sick child. Otherwise, resentment will slowly fester.
Fourth, what has been done to address your DD's fears and anxiety? They can be treated medically, even if they are not the cause but the consequence.

[Anonymous]

Send the younger one to camp. Make a list with DD of activities she can do at home that are fine to stop quickly if she has to go run to shit. Make a list of places near home DD can stop and get treats (maybe italian ices? i don't know).

For family vacations I think your best bet is to rent a place on the ground floor, where you can open the sliding glass doors and step out onto the beach. That way she's at the beach, but can run in to the bathroom when needed.

[Anonymous]

If she has a specific diagnosis, perhaps a support group with other families would help. Even an online one. And sometimes specific conditions have annual conferences where you can meet other families, learn how they manage, and she could meet other kids with the same thing.

[Anonymous]

I think you are restricting the younger child too much. She shouldn't be held hostage to her sisters medical issues to that degree. Let her live her life.

[Anonymous]

I think you are restricting the younger child too much. She shouldn't be held hostage to her sisters medical issues to that degree. Let her live her life.

1+. I think you are losing perspective on this - and it is almost like because you are suffering in solidarity with your DD, you are forcing everyone else into this position. It isn't fair or sustainable.

[Anonymous]

I think finding a psychologist who specializes in chronic pain would help for all of you. I got a lot out of my appts with Jodi Brayton, a psychotherapist in McLean, VA. http://kaplanclinic.com/the-kaplan-team/jodi-brayton/ Good luck to you and your DDs.

[Anonymous]

Agree you shouldn't make your younger child hostage to the older one. Try to make her life as normal as possible, and spend some time with her alone doing something she enjoys.

Do date nights occasionally with your DH. Chronic illness in a child affects the whole family, but you have to try to minimize the damage.

In my experience with chronic illness, first with my oldest and then with my youngest, what really helped was getting a diagnosis and then getting a reasonable treatment plan implemented. I was relentless in researching and tracking down all kinds of medical paths and probably was not at my social best doing it. But it paid off. It can take a long time and sometimes you just have to take a break from it all. It is very tiring, but no one but you has the same motivation to get your child well.

And it is lonely unless you can find someone else to share experiences with. Mine was a work colleague who had two kids with chronic illnesses. We could be excited for each other at the smallest sign of progress in a way no one else would understand.

One of my kids has a chronic GI problem (not like yours) and I understand how terrible they can be--mine was actually pretty housebound for a year. We lucked into a great doctor at Johns Hopkins and things really turned around.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Poor child! My sympathies, OP, to you and your whole family.
I heartily wish your daughter a speedy resolution to her GI problems. Do the doctors have any idea what's happening?
I'm no expert, but isn't there some severe anxiety going on here? Any trauma suffered 3 years ago? Has she lost significant weight? Does she have other symptoms apart from constipation and pain? If her menses have started, any correlation with her periods? Has stool been sampled for bacterial analysis?

You are probably depressed, and should seek medical help too.

Do you really think your questions are helpful, or that OP would not have asked herself those questions and 5,000,000 others?

[Anonymous]

OP, I am so, so sorry! This sounds overwhelmingly hard. My one small piece of advice is to treat your daughter's anxiety not just as a reasonable consequence, but also as something that needs to be managed and can be changed. This may include medication. My child (other issues) saw a psychologist for years before I even considered an SSRI and ... honestly I don't know why I let him suffer for so long when a very effective medication was available. It was effective pretty quickly and life-changing for him--which meant life-changing for the rest of us. I am sorry, OP. Please vent whenever you need to. Hugs.

[Anonymous]

Is your DD able to go to school?