Struggling mentally

Really finding it hard to be positive just now. I know Andrew is in remission just now but I just get that feeling (I'm sure you all know it) that something isn't quite right. Nothing concrete, just his tummy being more noisy and his passing gas - something he's never done before.
Amy is hurting really badly for the last couple weeks, she's pale, tired and unhappy knowing no one is treating her. I'm so sad watching her suffer and now she isn't wanting to eat because it hurts. Still waiting on psychologist 4 months later and no other treatment. Back to the gynae this week. Laparoscopy soon I hope. Any ideas on pain relief?
My stomach is really hurting, starting investigations and my best friend who beat breast cancer just found out she has bowel cancer.

No wonder that it's hard to be positive right now--that's a lot to handle all at once. I hope that Andrew's issues turn out to be nothing, and that you get some answers for Amy soon. It's always hard to see your kids in pain, but it's especially hard when you don't feel like anyone's taking it seriously. Hope that you're feeling better soon too, and I'm so sorry about your friend. :ghug:

YES! We definitely know that feeling! But absent any obvious symptoms we just have to suppress the worry and wonder and press on.

With poor Amy and your friend it is no wonder your stomach is hurting!

My heart breaks for Any. It is so unfair that a child could be suffering and no one is taking any concrete action. UGH! Feels like you are screaming in a room full f people and no one is listening.

I am so sorry to hear about your friend. :rosette2:

I'm so sad for Amy. I wish someone would take her pain seriously. A psychologist might help her deal with the pain (and I'm all for psychologists) but she's still going to be in pain! I hope the gynecologist is able to give you some answers.

Have they ever tried any medications for neuropathic pain? Gabapentin? Lyrica? Elavil?
We've found heat best for tummy pain but I'm sure you've tried that.

We use these: http://www.snuggables.net/plush-stuffed-animals

Would it be possible to get her to a pain management doctor?

I hope you feel better soon too - when it rains, it pours huh?!

That is a lot to tackle at once.

Re Andrew, try not to worry. Over the years, there have been many times I was certain my 'gut' feeling that something was wrong, turned out to be nothing. I know it's not always easy to do but try to put these worries aside until/unless you have something a bit more concrete. Or, until his next follow-up when you can run it by his GI.

As for Amy, that is so hard and no easy answer. I can imagine how heartbreaking and frustrating for you to see her and know you've exhausted most, if not all, options right now (unbelieveable that any modern medical system can leave a child stranded like this!! :ymad. I hope the gyna can find the reason for her pain! :ghug:

And, I'm so sorry that on top of your worries for Andrew and Amy, you're not feeling well yourself and dealing with your friend.

Try to take care of yourself as much as possible so that you feel strong enough to tackle everything else. Are you starting your new job soon? Being out, meeting new people and having new, easier, challenges to learn will probably help you feel a bit better (and better able to get through these issues)!

Thinking of you! :ghug:

(If all else fails, do as CIC does... pull out that wine bottle! A mom's version of supplemental EN!! )

Thanks everyone. I am trying to keep positive about the job, really looking forward to it. Starting 15th Feb.
I did ask about pain management team but was told they wouldn't suggest anything different. We did try amitryptaline but found it did nothing for pain and made her hallucinate. I'm sure things will seem better in a few days.
That bottle of wine in the fridge is looking good!

I'm sure the job will help! Helping people plan for their vacations can only help take your mind off things for a while! If anything, you may soon be feeling down because you aren't planning your own vacation! :lol:

:ghug:

Sending hugs :ghug:. All those medications are slightly different - just because she reacted badly to one, doesn't mean she'll react badly to others.

I hope the gynecologist has some ideas.

I'm so sorry. Things are pretty rough here too and seems like no good end is in sight. I try to treat myself to little joys in life so I have things that I enjoy to get my mind off all our troubles. Today I bought myself a new birdfeeder. I'm imagining lots of pretty birds using it, and how my cat will enjoy watching it too.

Sorry to hear all this, it's overwhelming....hugs to you and your family.

Sascot,
That is so rough. Amy's issues really sound more then Gyn. Eating does not affect the gyn system. When she eats and then is having pain that says GI to me. Is the GI not willing to do any further work up on her?
Sending you big hugs!

Sascot

Think of you and your family. I am also struggling at moment.

Hugs Sascot
Never easy
If you can hear his stomach moving from across the room
Please let your. Gi know ASAP
That's a warning sign of a stricture

Wishing you could find answers for your dd

Love and hugs to all having a rough time
Wish i had a magic eraser to erase all our pains n sufferings. I pray things improve soon . Best wishes to you all

Good morning Sascot. I am so sorry you are dealing with way too much now!

Im sure watching Amy hurt so much is tearing you apart. Let's hope the gyn has some great wisdom and answers, and if not, can point her in another direction for help.

So sorry about your friend and that her cancer is in an area of body we know too much about. Was it detected early? She has beaten it once so we want a repeat of that story.

Please be good to yourself as you deal with all of this. The new job might turn out to be a real blessing.

Keep us posted.

Hugs my dear forum friend.
Sorry I didn't reply sooner.
Is anything looking better?

I hope the job helps give you a few hours of normal a day.

Sending hugs - you are dealing with so much right now. I'm with MLP re the stomach noises. J has several strictures in his small bowel - they create a lot of noise! Might be worth contacting GI/IBD nurse xx

Thanks for all the support. Ended up at the hospital with Amy last night. The doc was very nice and did say we really need to find meds to manage these symptoms and it's not right she's struggling so much. However, no tests done as usual and no tests recommended. They seem to believe she's had so many tests. She's had an ultrasound, a colonoscopy and endoscopy and a blood/stool test. That's it.
Surely it's better to find the pain and possibly take it away rather than never doing more tests and trying to manage it? They always make me feel I'm being unreasonable expecting more testing, or that it's cruel on the child to keep going through tests.
I will speak to the nurse about Andrew's noisy tummy in case it's an issue

Sascot, I'm so sad to hear this. I wish they would at least TRY to figure it out.

Sending hugs :ghug:!

Gosh Sascot, I completely understand your frustration, and you are definitely not being unreasonable. Your little girl is in pain! Especially if the pain comes shortly after eating or before a BM, I would suspect a GI issue. Have they thought of a CT or an MRE? This way they could get a look at the entire GI tract and whatever else might show up in the abdominal area? Hopefully the laparoscopy will give you some answers, or at least let you know what it is NOT, and then they can go from there. Waiting 4 months for a psych consult is way too long....I hope she gets one soon. Hang in there and keep us posted.

Big Giant Squishy Hugs. You certainly have a lot on your plate. Hope the rest of the year is filled with only good news and answers.

Sascot, Catherine, sorry both of you are struggling right now. Sascot, my mother is going through a similar medical situation right now. It is so very frustrating to know there is a problem, and to find so little help dealing with it. My heart goes out to you.

The GI was dismissive last year and refused to do a small bowel MRI or pillcam. He also wouldn't refer her to a dietician to try elimination diets.
We had a pelvic MRI through the gynae today so waiting on those results.
Quick question - if it isn't Crohns, what could cause an otherwise healthy 13 year old to develop an ulcer in her stomach and/or severe pain after eating?

Sascot,
That is a very good question. Here is what they said online and of course they forgot to include crohns as a possible cause but we all know that is one,
http://www.healthline.com/health/stomach-ulcer#Symptoms3

Here is another one, this one more aimed at kids,
http://kidshealth.org/teen/diseases_conditions/digestive/ulcers.html#

Thanks for the links, interesting. She has been tested a couple times for h pylori and they always come back negative.

I have a dx IBS. Wheat gives me pain and reflux.

Does she also have nausea after eating? Fullness? Does she get full after taking a few bites?
Those are all symptoms of Gastroparesis.

Ds had increased constipation and belly pain ( double over ) as part of his Gastroparesis .
Hugs

She doesn't have any nausea or fullness, just pain. She is on omeprazole from last week and the pain after eating seems to have settled, she is back to her normal level of pain.
The paediatrician actually ordered a tummy, small intestine and pelvic MRI yesterday - I didn't even need to beg! It's the NHS so it will probably take at least a month, but it's something

Heres hoping you dont have to wait to long. I hope they can get a handle on whats happening and help her feel better soon. Hugs

Sascot said:

normal level of pain.ng

Click to expand...

That just sbout broke my heart

Glad you found someone who will try. Sending fast wait time vibes your way.

That's so great that she is requesting that all those areas be tested! Wish it didn't take so long but, at least, it's in the works!!

We have similar wait times here too! :ymad: I don't know if it works the same over there but, here, once you have your apptmt, you can call the imaging dept/centre directly to request a cancellation date. This has worked out for me in the past for one of my own MRIs. But, heads up, while I was aware of the new date, my doctor wasn't - if I hadn't called back to follow up MRI results, doctors office would still have been waiting for results from the original date!

So glad to hear about the MRI! Hope you don't have to wait too long.

SO glad they ordered that MRI! Hope it gives you some answers and you can get it done quickly.

What are she iron levels like? Not just ferritin but others as well.

Catherine - they told me that all bloods are in normal range. Not sure if they did a ferritin or not.

Iron studies are not typically done unless the CBC numbers are showing anemia .
Ds only had his checked as part of standard Ibd checking
His CBC was normal on all counts but ferritin in the iron studies was low and tibc was high
Good luck

I have a child who has been referred to a GI for low iron. She has never had anemia. Her iron levels just have not increase enough with supplements.

My oldest daughter was undx for 4 years. Initially iron was low without anemia. We now know this was caused by undx crohn disease. Her ferritin was tested as the GP who said her stomach pain at the time was caused by stress but another cause could be low ferritin.

Will ask them to check it next time. Poor girl has a spiders web of tiny veins so blood tests are always interesting! 4 years is a long time to be undiagnosed, good thing they finally figured it out

Sascot,
So glad to hear they are finally taking her seriously!