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AmaliesMom

Joined
Apr 21, 2014
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Hi all,

It's been a couple of months since I was on. My oldest daughter Amalie was diagnosed with Crohns about a year and a half ago and is now in remission. My younger daughter, Zoè started to display symptoms over the summer months: frequent BMs, severe fatigue, regular nausea, reflux, bloating, skin rash, fever and joint pain.

Having missed Amalie's symptoms and feeling very guilty about it, I straight away wanted to get Zoè help. She initially was aversive to this as she had lots of mucous and thought this was parasites, it wasn't. Once we got past that, Zoè went to see our primary care doc who referred her to Amalie's GI here at home.

Amalie's GI felt that Zoè was displaying 'Crohn's Hallmarks' and scheduled her for a colonoscopy, gastroscopy and ultrasound. While waiting for this. Zoè's symptoms progressed and I was bracing myself for an admission post scopes for a new diagnosis.

Zoè had all of her investigations, the GI came back to us and proceeeed to tell us that all looked great! Her bowel was perfect and except for an area of mild inflammation in her stomach, all was good.
The GI took some biopsies and did some blood work on the day and we are waiting for the results of these, but presumably if everything looked OK, they will yield nothing. She has an ibs diagnosis for now.

Although I am really happy that there is nothing serious going on, I'm also a bit perplexed. Zoè's symptoms are so severe and I really thought it would be CD. She herself is dejected. She's incredibly upset because she feels she'll be stuck with these symptoms and life.
Amalie's not making things better. Constantly teasing her sister, calling her a baby, berating her for being so affected by ibs when it isn't even a real thing and telling her it's all in her head. I feel that this is slight envy on Amalie's part who probably wishes that her investigations all those months ago would have yielded the same results.
Zoè keeps apologising to Amalie for making such a big deal about her symptoms when they're "all in her head."

What does a Mom do in this situation? Bear in mind that both kids are in their 20s so this is all quite childish. Do I just accept the ibs diagnosis for Zoè even though Mommy instinct tells me she's suffering a lot and there's more to it? Surely a normal result means there's nothing else? How do I ask Amalie to stop making her sister feel bad and how do I explain to Zoè that it's not all in her head and she's entitled to tell us when she feels unwell.

Any advice would be greatly appreciated. Both girls will be home full time for the holidays in the next few days and I firstly want to make sure I've gotten Zoè all the help she needs and secondly avoid world war three erupting.

Thank you all.
 
Wait for the biopsy results
DS and many kids here
Looked good visually
But still had crohns on the biopsy results

Hugs
 
Oh and ask for a pill cam and MrE
The small bowel is hidden and crohns can be just there and not in the large intestine
 
Our daughters are similar, although our youngest is only 11 and older Crohn's kid is 16. 16 yo berates younger sister every time she is sick and belittles her. Younger sister gets sick a lot. It makes me crazy that older sister is always comparing herself to younger... I wish they could find compassion and empathy for each other instead.
 
Thank you all so much. Our GI won't do FC if colonoscopy appears normal. I'm going to try and push for it though. Isn't it amazing that siblings never change, even when they grow up.
Zoè is so down today, bordering on depressed. I'm telling her that we'll get to the bottom of it but she's just so fed up. She said there's no point looking for anything else because it's all in her head.
She's missed a lot of school due to her symptoms and now she thinks she's going to lose credit for this as there's actually nothing wrong with her.
I've tried to tell her to relax as stress doesn't help anything. Even though my girls are all grown up I still worry about them like they're 6 and 10 again!!
 
Tell them that belittling and berating each other is not acceptable. IBS still causes symptoms and can make people's lives quite miserable. Amalie needs to understand that. Poor Zoe :(.

My girls are also "grown up" - 18 and 22 but being mean to each other is not ok. One of the girls is much sicker than the other, but that does not negate the other's suffering. It's been easier for us because they were diagnosed when they were younger, so they actually (occasionally) listened to me then and learned that it was NOT ok to be mean about "who is sicker" etc.

I agree with the others - wait for the biopsy results. If negative, I'd ask for an MRE or pill cam. Otherwise, have you considered seeing a rheumatologist? Sometimes, rheumatic diseases also have GI symptoms. Spondyloarthritis (what both my girls have) can cause subclinical gut inflammation and GI symptoms.
 
Whoa Nellie! Ibs is a very reL thing and not all in your head. It can be very painful and debilitating both physically and mentally! If it is I s you need to get her with a dietician or doc who will help her identify her triggers and figure out what will work for relief. There was a time we thought my younger daughter had Ibs and her older sister with crohn's would say " boy am I glad I have crohn's. At least there are meds for that and docs pay attention".

All this said Ibs is a dx of exclusion. I would wIt until biopsied, small bowel imaging and tests for any other thing before assuming ibs. I am assuming they took biopsied to look for celiac.

There is a next dx. Non celiac gluten sensitivity. If all other tests turn up nothing I would work with a good dietician to start eliminating things in an effort to identify the culprit. Also maybe a psychologist to help with stress etc.

Hugs! I went through the Ibs rat race for years with my daughter. It is tough
 
AmaliesMom said:
Thank you all so much. Our GI won't do FC if colonoscopy appears normal. I'm going to try and push for it though. Isn't it amazing that siblings never change, even when they grow up.
Zoè is so down today, bordering on depressed. I'm telling her that we'll get to the bottom of it but she's just so fed up. She said there's no point looking for anything else because it's all in her head.
She's missed a lot of school due to her symptoms and now she thinks she's going to lose credit for this as there's actually nothing wrong with her.
I've tried to tell her to relax as stress doesn't help anything. Even though my girls are all grown up I still worry about them like they're 6 and 10 again!!
Click to expand...

It's no wonder she's feeling angry. I hope she keeps knocking until they figure something out. Has she been tested for immune deficiency, does she have joint complaints?
 
The two girls have always been fiercely competitive and Amalie has just taken this to a whole new level. Hopefully things will settle down soon. I'm going to have to sit them down and have a talk, but I feel it's best I plan for this. Saying the wrong thing to either of them will only be disastrous.

Away from all that sibling drama, I'm interested to get some insight into the actual diagnosis. Amalie's diagnosis was fast, one colonoscopy was enough to definitely say crohns. For this reason, diagnosis is one area that I'm a little foggy on.

I always assumed that a normal colonoscopy/ gastroscopy would rule out CD/ UC and any other serious bowel disease. Is this not always the case? Zoè has had a constantly raised CRP that doesn't seem to tie into ibs.

Sincerest apologies for waffling, I'm in a bit of a tailspin at the moment and since dad is not in the picture, there aren't many people who understand the situation.
 
Some people have inflammation in the small bowel - in places scopes cannot reach. That is why a pillcam or MRE is needed to rule out CD. Keep pushing for answers, the raised CRP makes it sound like something inflammatory.

I would definitely talk to your daughters about being more supportive and less competitive. They are going to need each other - BOTH are sick.

IBS is real and can be awful. My younger daughter has IBS and IBD and at times, the IBS made her life truly miserable. She could not eat anything without horrible cramping.

Poor Zoe - tell her we are thinking of her and praying that her docs figure out what's going on quickly. Seeing a psychologist might help both your girls deal with this. My younger daughter was very against seeing a psychologist but her GI insisted and it has made a world of difference. Her psychologist works in the GI clinic so is used to kids with chronic illnesses.
 
My kids are also older, 21 and 22, but age doesn't really matter to us moms... they are still our kids!

I do think you need to sit with each of them and tell them that understanding and support for each other is important. I understand what you're saying that, perhaps, there is a bit of envy from Amalie's side but she may also be feeling that an IBS dx doesn't merit the same 'worry' as an IBD dx. Somehow, you do need to make her understand IBS can have difficult symptoms as well. And, with Zoe, well, you said it yourself, you need to make her believe her feelings and symptoms are real and she is justified to be upset and frustrated. But, it's often like walking on a tightrope trying to deal with kids, regardless of age! :ybatty:

My husband has IBS and does have periods of symptoms and can become quite sick. Over the years, though, he has been able to figure out what foods and circumstances trigger his attacks. In his case, it's much what you'd expect... fried foods, spicy, take-out, heavy meals, fatty foods, foods that cause acid, etc. He also finds stress and/or repeated exposure to these foods will worsen his symptoms. While he can eat a burger/fries, pizza, etc., he can tolerate it in moderation... not bacon for breakfast, coffee and muffin for lunch and burger/fries for dinner. And, even in moderation, during times of stress, the impact can be worse.

As was suggested above, elimination diets can help her determine what triggers her symptoms. Keeping a food/activity (ie stress) journal might help as well.

And, of course, as was also said above, until you have biopsies and testing of small bowel, you may not have a complete answer yet.

:ghug:
 
She has undergone blood work for celiac. Came back negative. She's also been tested for H Pylori.

I've just gotten a call from the nurse practitioner in the GIs office informing me that there appears to be an abnormality on Zoè's ultrasound near her liver but they're not sure if it would be contributing to the issues she is experiencing re: GI symptoms. They want her in in the morning to run blood work but I've been informed that this is probably an incidental finding.
 
Incidental doesn't mean it isn't something just means it's probably not related to the problem they were originally looking for.
At dx DS had an abdominal CTE.
Showed thickening in terminal ileum but also had an incidental funding of two cysts in each kidney .
Which meant the GI wasn't handling it but we had to see nephrology quickly afterwards .


Hoping its a minor thing
 
my little penguin said:
Incidental doesn't mean it isn't something just means it's probably not related to the problem they were originally looking for.
At dx DS had an abdominal CTE.
Showed thickening in terminal ileum but also had an incidental funding of two cysts in each kidney .
Which meant the GI wasn't handling it but we had to see nephrology quickly afterwards .


Hoping its a minor thing
Click to expand...
Yrd
 
Hi AmaliesMom,

sorry to hear your younger daughter developed similar symptoms.
My Crohn's was only diagnosed by MRI scans, the scopes have been clear for a long while and my symptoms were very severe for IBS, also not related to stress etc. (normally improvement during holidays, weekends etc.)
MRI could be very helpful though as well, but choose a centre that has a radiologist who is sees many Crohn's patients daily (it's very hard to hand in the scans to someone who does see many Crohn's patients, afterwards, nearly impossible).
Wishing all the best!
 
Great advice from all above so not much to add. Just wanted to mention that a high crp would indicate some sort of inflammation or infection in the body. A lot of people with Crohns have other autoimmune diseases, it is possible that your younger daughter might have an autoimmune disease that has stomach issues included but isn't a definite Crohns diagnosis. Good luck and keep fighting. I am having issues with my younger child with no answers so far
 
Hello Again!

Sorry that I haven't been by to update in the last day or so. It's been a very stressful and worrisome time. We went by for bloodwork and a repeat scan but had a consultation with the GI first. Given their ages, the girls usually go to appointments alone, but I just felt that it would be best for me to accompany Zoè. After all, this was some sort of abnormality that they flagged and with the way she's been feeling lately, i didn't want to leave her alone to take all the info in. I'm glad I accompanied her.

From what I gather, there is some whitening?? on the ultrasound near her liver. The doctor said that this is nothing sinister, probably just some inflammation and it wouldn't account for the symptoms that Zoè is presenting with. She wanted to order a CT scan and some bloodwork just to make sure it's no infection that needs prompt attention. If it's not, she said to leave it as is, it's not causing her GI symptoms and she's not displaying the symptoms that it may cause so there's no point in treating it. I was perplexed by this. I questioned and questioned but she kept saying "just wait until we have everything back and then I'll reevaluate."

So, Zoè went to have her repeat scans/ bloodwork and I waited. We are non the wiser as to what's going on and I'm seriously considering a second opinion with Zoè. Yes, Amalie has been very happy with her GI but Amalie was a by-the-book diagnosis with ulceration and inflammation that could not have been clearer on her colonoscopy. She's also been lucky enough to get her disease under control rather easily (from accounts I've read here and stories I've heard) with Humira/ Pentasa. For that reason I feel we've never seen her GI in a situation where it's not clear cut. I feel Amalie might benefit from someone who is more thorough in investigation.

Well, that's the end of my ranting for now. As always, thank you all so much, it's great to know that there's people that know exactly what I'm going through and are willing to listen to my chatter and offer help and support. I hope to play a more active, helpful role here once things die down here. I hope everyone is getting ready for the festive season and enjoying some quality time with their families. I know for some this may be confined to a hospital, if this is the case, I hope it is still a happy one.
 
I think a second opinion is a great idea! Did the doctor say anything about an MRE or pillcam? Crohn's can hide in the small bowel.

It's always nice to get a second set of eyes to look at the situation, especially since Amalie was an textbook diagnosis and her GI may be comparing Zoe to her. Kids in the same family with the same disease often have very different presentations, so it's worth looking at her small bowel before ruling out IBD.

Will be thinking about you all :ghug:.
 
So sorry about your daughter.

I know what you mean about wanting to have figured out the first one earlier - there must be so many of us in the same situation. No need for guilt - you sound like such a caring proactive mom. This stuff is hard to figure out, and people generally don't like to talk about these kinds of symptoms.

I like the idea of getting a second opinion.

Also, Sascot's response resonated with me - the idea of ruling out a bacterial infection if a good answer doesn't turn up. I was recently talking with someone who is miraculously alive after Lyme disease (accident in the hospital sent it to the spinal chord). He is a pioneer in his own treatment, and cautioned us to make sure we had ruled out Lyme for our daughter's Crohn's symptoms (can be similar, but most doctors don't know).

In the meantime, are there some dietary changes you can make (anti-inflammatory)?

Wishing you all the best --Judy
 
Hello Everyone,

It feels like forever since I've been on here but I suppose I just wanted to let you all know about what the outcome was to all of Zoè's testing.

The last time I was on, we had no clear diagnosis for Z bar some IBS and something that looked a little funny around her liver. After Christmas, frustrated with the apathy of Amalie's GI towards Z's problems, we looked for a second opinion through our primary care physician and boy am I glad I did.

Zoè met her new GI, a lovely young man who suggested we start from scratch, run a battery of blood work and do a CT scan. Z spent a day in the hospital having all of this done and we returned home, not expecting anything to come out of it. Fast forward a little over a week and I got a call to my phone from the GI himself asking me to bring Z straight in with enough stuff for a moderately long hospital stay. I was taken aback straight away.. No.1, Z should have been the primary contact so in ringing me, he probably was trying not to scare her. No. 2, what was so wrong that required a moderately long hospital stay?

The next few hours were a blur, sorting out all the practicalities before we headed off. We set off for the hospital and arrived at reception. I asked the secretary where we would find the name of the ward I was told to present at and in that moment, my heart stopped and mothe's intuition kicked in when the receptionist said oh yes, just follow the signs for oncology. I was rooted to the spot for a few seconds, and I knew Z was panicking too, quickly though, I had to pull myself together and we both made our way to the ward.

We spent a total of one month in the hospital trying to get answers and poor Z was subjected to more scans, scopes and surgeries than you could shake a stick at. Z was diagnosed with neuroendocrine cancer of her bowel that has spread to her liver. Although this sounds horrifying, Z is very lucky. Neuroendocrine tumours are cancerous but they don't act like the cancer that we've all come to know. With surgical resection and some other treatments, one can live a long and healthy life.

Z had two surgeries, one to resect the tumor in her bowe and the other to remove part of her liver. She has also been placed on a weekly injection to keep her well. Although she has been through so very much, she is doing remarkably well and is feeling better than she ever has.

Neuroendocrine tumours can cause something called carcinoid syndrome and it is this that made us think that Z had Crohns too: facial flushing, nausea, diarrhoea, it's so similar to crohns! I'm so happy we finally got an answer for Z and we got it so quickly, these tumours are notoriously tough to diagnose. I'm obviously scared and worried for Z, but the doctors have assured us that this is more like a chronic condition than a cancer and so can be managed. Z is being so positive and getting on with life so I must do the same.

So, that's what's been going on in my life for the last while and that's what was wrong with Z. Do I wish it was Crohns now? No. That's something that so many people have asked me and honestly I see it no different to Amalie's Crohn's. Although Z has been dealt with the big C card, Amalie also has a serious and chronic disease that will affect her for the rest of her life. I suppose what I'm trying to say is, don't ever let anyone berate you for taking your child's diagnosis badly. Although I was absolutely inconsolable when I heard the C word being bounced around during Z's diagnosis, I was equally upset when Amalie was diagnosed with another C.

Thanks so much for all of your help!
 
Wow!! What a story. I'm so sorry to hear it was cancer but I'm glad they found it and Z is feeling well. What a scary journey.

Will Z need more surgeries? I hope she stays well and has no problems with her treatment.

Really hope this year is better for BOTH of them :ghug:.
 
Thankfully, from her last PET scan, Z doesn't seem to have any other lesions anywhere which technically means she is free of neuroendocrine tumours and we're hoping that's the case. These injections should act as an insurance and prevent anything from coming back. In a way, it's a very straightforward and treatable diagnosis so we're very happy for that! Both girls are doing extremely well at the moment and have FINALLY gained mutual respect for one another! :)
 
Goodness! I still have chills from reading your post. I hope you dusted off your mother of the year trophy and have it prominently displayed for all to see. You saved your daughter! YOU pushed for a second opinion and saved her! What a fabulous doc to have found this! What a crazy journey! I am impressed with how well you are all handling things and especially glad that the girls have a new found respect for one another.
 
Yikes! It sounds like the outcome was okay but, man, super rough. I sometimes wonder about how a cancer diagnosis is similar /different from Crohn's and it looks like you are living it.

How is Amalie handle her sister's diagnosis?
 
Wow, what a journey. Really glad they found the cancer and she is doing well now. That second opinion was truly worth it.
 
So glad that they found the problem and that it was treatable! Thank goodness you kept searching and got that second opinion. Your hope and courage are inspiring.
 
Your family has been through a lot! So happy to hear that you have a wonderful prognosis and things are going well now. You must be so relieved!
 
Wow! That is quite a story and I am so glad you updated us. I think these type of things are so important to know about. You put together a letter and send it to the original doctor who was wrong about things so he knows he missed this diagnosis. It could save someone else on the future and hopefully teach him not to be so laid back about things.
It is interesting that the doctors are saying it is more like a chronic condition then a cancer as I just read a very interesting article about them changing the name of certain types of cancers to not call them cancer as they are more like a chronic illness and to change the stigma and fright for the patients by changing the name. Thea re starting to do this with certain types of thyroid tumors.
Very interesting.
I am very glad to hear she is doing well.
Please keep us posted on both girls progress.
 

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