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My family thinks I'm crazy because I can't stop obsessing about my son, because he hasn't been officially diagnosed. Since my mother has an ileostomy since 1983, all I can do is worry and cry. I'm exhausted and depressed. By the way, the ironic part is that I'm a mental health therapist, so I know all the right words to tell others. Crazy....I feel so alone.

 Reply posted for Titan1.

OK...so when can I get these tears in check? I finally decided to call my therapist. I find that as soon as I start to think about my son, I start to think about all the things I could have done differently with my parents' health care. I am sitting here going crazy and I don't want anyone see me like this, especially my kids. I even find my stomach hurting from this. I wish I could kiss this boo boo goodbye, like when he was a little boy. No one told me parenting could be so tough.

 Reply posted for lorraine.

Well I guess the good new is the insurance will be in place and there won't be any question when the bills start rolling in........as you know from first hand experience, it is so expensive.   Unfortunately, it does put your wait off another week (though I am impressed to hear you had immediate results- that's amazing).   I hope the low fiber/residue route gives him some relief in the meantime.

Be well and keep me posted........I'll keep you all in my prayers.

Lizzies Mom

 Reply posted for Titan1.

I go through times when I cry and then I go times when I get angry that the doctor hasn't tended to things in a timelier fashion. Also, this doctor never suggested that, in the meantime, he try a low fiber/low residue diet. That would be non-invasive. Since I his last visit when I gave him a low fiber bread, low fiber cereal, and smooth peanut butter, he has less cramps. Now, why couldn't the doctor suggest this? I found out that my son had been eating high grain bread, granola, apples, etc. OUCH. I am dealing with anger over that. I guess I will be going through a myriad of feelings over this. Illnesses don't just involve the patient, do they?

 Reply posted for lorraine.

Yes, words alone don't help. If you can take some time to take each thing one at a time. Our imaginations don't always help. Time is a big factor in all of this. Remind yourself your son is not in imminent danger. 

 Reply posted for Lizzies Mom.

I've had a couple of colonoscopies myself, and know how nasty the prep is. Now, on both occasions I had the answers immediately. When my mom had hers, the doctor was able to tell me the results immediately. Actually, he invited me in to watch the journey. Woopie! My son spoke put the scope off until the following Tuesday, and spoke with Cobra, so that the insurance piece is in place. Thank you for your prayers. It really wasn't smart for me to text him at the time I did, was it?

 Reply posted for lorraine.

Oh no, could the timing have been any worse......NOT!   I feel aweful.....can only imagine how you felt.

It is good that he is scheduled for the scope.   This will enable the doc to actually get an up-close and personal look inside.   I must warn you, the waiting won't be over at that point either.  Once the procedure is complete, the doc will only be able to tell you what he observed visually.  The biopsies that he takes along the way will then be sent out for further testing.  

You should also be aware of the prep.   It is definitely challenging.  Just think, clear fluids and cleaned out from the inside out.   The cleaner things are inside, the better the test results.   Lots and lots of clear liquids and ice pops (no red) and jello.  I'm sure the doc will give him the specific pre-procedure clean-out directions.

I will keep you and your family in my prayers.

Lizzies Mom

 Reply posted for Lizzies Mom.

I did something really stupid today. I was at my conference today, and I texted my son to see if he had the results. WRONG MOVE !!!!  He said that it showed that there is probably Crohns or UC and that he has a Colonoscopy scheduled for Tuesday. In front of 525 people I ran out of the room crying. Fortunately, one of the therapists close to me told me that she has Crohns when I returned. My husband and I are going up to New York so that we can have our concerns answered.

 Reply posted for lorraine.

Yikes, don't let the insurance lapse.   I know first hand how terribly expensive all of this can be.  The last thing you need to happen is no coverage.

Hopefully by the time you are reading this you have a better idea of your guy's condition.   We parents know how difficult the weighting game is....it just makes you crazy.

You will be surprised how quickly your son will learn what does and does not agree with his gut.   That is one advantage you have being he is older and going through the tests/diagnosis.   Try doing it with a toddler!  It wasn't easy. 

It will take lots of trial and error and label reading, but eventually it will become second nature.  I don't even call it a diet, it's a lifestyle.  One in which I had no choice but to embrace.

Keep me posted.

 Reply posted for Lizzies Mom.

Oh yea, there is another glitch to this, which is his health care. He was working on a project for Nickelodeon ( he is an animator) and the project is finished. This means, he is waiting to hear about his Cobra. This is not a good time to be without  good health care, is it?

 Reply posted for Lizzies Mom.

He is going later this afternoon. Thank you so much for asking. I have been making my own personal deals with God. He was also open to the low fiber diet. This is the only time in his life I have seen him afraid to to pass gas. He and his older cousins used to have cousins, lol. This has to be bad.  His girlfriend is a vegetarian, so she too, will need some education on his dietary needs, I guess.

 Reply posted for lorraine.

Just wondering if your son's scan showed anything diffinitive?  Hopefully you have a confirmed diagnosis.

Lizzies Mom

 Reply posted for Lizzies Mom.

Thanks for your reply..
Tomorrow he goes for his scan. He was in overnight, and I made him a recipe I found on a Crohn's recipe site. He responded well (only 1 bathroom run and a few smelly passes). He didn't know about eating low fiber. In fact, his doctor had prescribed fiber supplements. Now I feel totally crazy (and pissed off). Couldn't that have harmed  my son? Without a diffinitive diagnosis, couldn't he have suffered more than he had to? BTW, my son told me that he had a really easy time digesting burger king little burgers. There's low fiber for you. Anyway, even though I don't want to hear IBD, I want to know what this culprit he is dealing with is, so that we can fight it. Thanks for listening.

 Reply posted for lorraine.

You aren't crazy.....you're a Mom!

Even though you are in the therapy field, doesn't make you immune to the subject.  

My daughter has been a CD patient from infancy and will be 10 soon.  We have had our ups and downs, but we just keep on keeping on!   After all, when given lemons, make lemonade!!   That has been our "motto".  

I think once you have a confirmed diagnosis you will have a better idea of course of action.  A lot has changed, new meds have come out, updated procedures, etc. since your Mom's.   From all I have learned over the years is that no two cases of UC/CD are the same.  Let's hope for the best and enjoy as much of every day as you can.   Kids are wise to their parents, and can easily sense what you are feeling.......so, put on your game face.

You certainly are not alone.  

I'll keep you and your family in my prayers.

Lizzies Mom

 Reply posted for laurafran.

laurafran,
Thanks for your response. I know that I need to look at this thing differently. I also suspect that I may be "over-reacting" because of what I've gone through with my mom ( including a recent hospitalization where the nurse refused to clean a leaking bag until the other bag came up from supply. No matter how many times I went to the nurses station, she refused to come in, allowing the stool to run onto the floor). I guess that has a lot to do with why it is so hard for me to let go of the fear of my son's diagnosis. He is going for his
cat scan on Tuesday. I don't want my son to have to go through that. But, for now, all I can do is try to bring low fiber and low lactose foods in the house for his visits, right?

 Reply posted for lorraine.

Both my husband and I spent months devastated and sad for our 11 yr old son diagnosed with crohn's last spring.  funny thing was that he wasn't sad. I decided I wouldn't be any sadder than him, that it wasn't fair to him to be feeling pessimistic about his future.  We're taking it one day at a time now, living the fullest life we can and when each new flare or symptom crops up we try not to get sad or depresssed we get  busy figuring it out.  Yes I worry about  his future still but am trying to see it as living differently, not living less.  Hope that helps.  BTW, the specific carbohydrate diet is really helping him.