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kimmidwife

kimmidwife

Joined
Sep 19, 2010
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It has not been a good day. 😓
It started out that I got a text from my very close friend( who has been fighting cancer) husband that she is not doing well and is back in the hospital.
Then we had the GI appt. our youngest who is seven probably has Crohn's and our middle child probably has a carbohydrate metabolic disorder. They are both scheduled for colonoscopies next Tuesday.
I guess my head is officially out of the sand! Where's the wine?:voodoo:
 
Oh Kim, I'm so sorry :(. You deserve a LOT of wine!!
I hope colonoscopy preps and the scopes go smoothly.

Did the GI say anything about Caitlyn's pain?

Sending big HUGS :ghug:!
 
Really sorry to hear about all your troubles!! :( :( I do hope the scopes go smoothly and give you clear answers. Just sorry you have so much on your plate right now! :ghug:
 
Maya,
She is getting an MRE next week. We didn't discuss the pain program yet. To much going on right now.
 
Oh man! That just sucks all around. Pardon my French but it just does!

Scoping two in one day? Yikes! A wise person (she knows who she is) told me I shouldn't do that when it isn't a routine scope. Too hard to be in recovery processing a new dx an plan etc for one while the other is being prepped to be sent in etc. But it is a good for time management.

Why did the doc say your younger one probably has Crohn's?

:ghug:
 
So sorry to hear about all this, Kim. I'll be thinking about you and your kids this coming week, and I hope that the scopes and MRE are helpful.
 
I'm so sorry, Kim. This too will pass. Try to hug your kids and your friend as much as possible and live one day at a time. I'm thinking of you.
 
Two in one day ...
Yikes
I did one on a Wednesday and one on a Thursday and still had a rough time
If one wakes up poorly from anesthesia or anything else is fussy etc
Then your up a creek with a paddle so to speak to try and be there for the second one
Now if there is your dH that could help but
Most want mommy coming out of a scope

:hug:
 
Kimmidwife,
You are a lot more mature and classy than I am be because I would say much worse!! You've been hit with bad news times 3 with all the other mess swirling. Enough.

I guess the thing we can be thankful for is that tests are scheduled quickly. Sigh. I'm sorry.

Ps. I have suspicions about two of my other children but I just can't deal with that right now. Keep us posted
 
My little ones fecal calp. Was over 600 that is why the doctor is suspicious of crohns for her. She also has outright blood in her stools as well as stomach aches all the time. For my other daughter they did a stool test called reducing substance and that came back positive.
I think the whole family will be coming to the scopes and Caitlyn will be having her entyvio across the way in the same day which will be a little bit crazy but my oldest who will be home visiting will stay with her during the infusion and my husband and I will be with the two others.
 
Oh man Kim! I am so sorry. I haven't been able to get you off my mind since I read your post. You know have been there. I am so glad that you are getting a quick scope. I spent over a month trying to reason away a high FC only to end up with a Crohn's dx.

It is true what they say, "at least you know what you are dealing with" But I say, "ignorance is bliss". It is so hard the second time around because you are wiser. If there is any good news in all of this it is that you are controlling the dx rather than letting the disease control it. Plus she will have her sister to help her through. She has a great example of a strong young lady, dealing with whatever the disease throws her way and still enjoying life. I know for my T, that was the best thing ever. The doc asked how I thought she would take the news and I knew she would be fine because she had her sister as an example. I even overheard her sister go into her room and tell her that she just wanted to give her a hug an tell her everything would be o.k.. Nothing ca replace that special bond that they have.

Of course I am still hoping that the raised FC is from something else!
 
Thanks CIC. It is so hard though because she is so little. She is only seven and so doesn't really understand a lot of things. She is also the worst pill taker of all my kids I am so dreading if she needs pills. She is good about blood drawing though. She doesn't cry u to after and at least we don't have to chase her around the room like we used to with Caitlyn.
A Month Python song is goning through my head as I type this, "Always look on the bright side of life! 😝
 
Sending hugs Kim! I have also been thinking of you. My younger daughter was 12 when she was diagnosed and my older one was a big help at the time. It's like they have their own support group, right at home!

7 is so young :(. I hope the raised FC is something else, but if not, she'll have you and Caitlyn. And I'm sure she'll become a pro at pills in no time!
 
So sorry Kim! Just all awful all at once. Ugh. Tag team...that's all you can do! At least you will be done in a day...then lots of wine when you get home:thumright:
Thinking of all of you!
 
Thinking of you all at this stressful time. Really hope all the tests and infusions go smoothly next week so you can get clear answers and a plan.
 
Oh, my heart goes out to you. This is rough. I am glad you will have enough family with you to support all your little inpatients. At least it will all be over with at once. Praying for you... Keep us posted...
 
Thinking of you and hope all the prep goes well. I hope you have a few bathrooms 😉. At least you will know either way but yeah that sucks all around. We currently have our head in the sand with dd but I live in fear for that other shoe to drop. Please keep us posted.
 
Started them on clears and when my younger one realized she couldn't have croutons in her soup she started crying. 😥
 
Hugs never hard at that age
Ds had no idea what was coming for his first lower scope at 7.
At least he had done an upper one at age 6 so it wasn't as scary
 
We are at the hospital for the colonoscopies. My little one went back already. I am waiting with the second one.
 
Ps
Cailtyn is across the street she is supposed to be getting her entyvio today at the same time but she was having chest pain the past two days so the doctor decided he wants a chest x Ray first. My husband went over with her. They did the X-ray and I haven't heard anything so hoping they are starting her infusion.
 
Thinking of you, Kim. Hope there are answers on the chest pain soon.

Wish we could carry some of that load today for you!
 
Good luck Kim, we are thinking of you all!! Sending hugs :ghug:!
 
Colonoscopy number one done, by the naked eye it looked good. Now we just have to wait for the biopsies.
 
CIC,
Number one was the younger one, they didn't want to make her sit around waiting they said it is harder on the younger ones.
Child number two is done with the colonoscopy, she had an area of the stomach that was reddened but that was the only thing he saw. He took biopsies on her and we will have to wait for the biopsies on both girls for more answers.
 
Caitlyn's chest X-ray was good. Took forever to get the results she is finally having the entyvio now.
They said they don't know the cause of the chest pain but think possibly stomach related. She is having an MRI tomorrow, another day at the hospital! Ugh!
 
WOW! This is great news! All around!

With that FC I was fearing they would go in and see a mess...I guess they still have to do small bowel imaging and wait for biopsies but if disease just shows on biopsies then it is still mild and you can get ahead of it.

I will tell you the difference between the disease controlling dx and you getting ahead of it is night and day! Of course I am still hoping the high FC is from something else...could still be Celiac...not that Celiac is a bowl of cherries either but.....
 
Glad the scopes looked clear for your little one! But of course, we should wait for the biopsies before celebrating.

Really hope you get the results back soon, for both kiddos. And that the MRI goes well for Caitlyn? Is it for her chest pain or for her gut? Do you think the chest pain could be costochondritis?

Sending HUGS!
 
Glad they were visibly okay, hope the biopsy results don't take too long. Hope the MRI goes okay tomorrow
 
The MRI for Cailtyn is for her continued abdominal pain. We are trying nexium for the chest pain. She has been off PPI's and Zantac for six months and was doning well so we are thinking maybe she is having reflux again. She is upset about it but I promised we can try it for a short time and hopefully she won't have to go back on them long term again.
I am hoping the other girls will be okay. But the doctor is still concerned and he didn't want. Us to get to excited before the biopsies are in.
 
Crohns in the biopsies or not a visually good cope is still a good thing. If biopsies turn up Crohn's it means you are still catching it early.

Any mention of MRE? I would really not celebrate anything until the whole system is looked at.
 
I'm glad it all went relatively smoothly and do hope the biopsies come back clean as well (although, that will still leave you without answers!). :ghug: Hopefully, it won't be long for the results.

Poor C, just another test to undergo... she really needs a break from this!! :ghug: :ghug:
 
Glad scopes looked good visually
Waiting for biopsies is hard
Either way it's fmgoid to get answers so you can move forward
 
CIC,
He didn't talk about that yet. Probably if the biopsies on my older daughter H come back negative he won't do any more testing and will rule it as IBS.
For my younger since her fecal calp. Was elevated he might want to do more testing. I guess we will see. Putting my head back in the sand until the biopsies come back!
 
I'm so sorry Kim. I know it has to be so hard with all that is going on. I hope you find answers and relief soon. Sending hugs your way!:hug:
 
Sending BIG hugs and thinking of you. It will get better, just hang in there :ghug:.

Hope Caitlyn's MRI goes well.
 
Sorry you have so much on your shoulders! I hope you get answers to all very soon - regardless of the answers, it's so much better to have a plan to move forward.

Sending hugs :ghug: :ghug:
 
Positively hate limbo! Take the day to sulk. Answers are coming soon and then you get up and fight! You have done it before you can do it again! :ghug:
 
Aww, Kim... hang in there, sweetie. You have a lot on your plate right now. Just know you have a HUGE group of people here hoping and praying for the best for your family. And remember, you don't have official news yet so don't burden yourself with those worries.

Hugs...
 
Wanted to update you'all,
Caitlyn's MRI went pretty well today except for the 1 hour delay because they couldn't find the orders for the test when we got there. It is seriously ridiculous. They had the insurance approval and everything else how could they have lost the bloody orders!!!
It really is ridiculous, two days in a row we had an issue with them and the orders.
I am sipping on some wine, I really need to relax.
Oh and Caitlyn's chest pain moved into her shoulder. I am thinking maybe something muscular, maybe like Tess's son is having?
 
Glad you got your wine ;) - you've had way too much going on lately!

Hope you get the results soon :ghug:!
 
kimmidwife said:
Wanted to update you'all,
Caitlyn's MRI went pretty well today except for the 1 hour delay because they couldn't find the orders for the test when we got there. It is seriously ridiculous. They had the insurance approval and everything else how could they have lost the bloody orders!!!
It really is ridiculous, two days in a row we had an issue with them and the orders.
I am sipping on some wine, I really need to relax.
Oh and Caitlyn's chest pain moved into her shoulder. I am thinking maybe something muscular, maybe like Tess's son is having?
Click to expand...


Chug it. 😀:ghug:
 
Today was not a good day. Spent half the day in the Regular pediatrician office. Caitlyn's chest pain is really bad. We realized the pain is very similar to the pain Tess's son is having. Anyway they wanted us to go to the ER but her vitals were all normal and I just couldn't spend another day in the hospital. So we agreed if she got worse we would take her in. Meanwhile after the Nurse Practitioner's exam which was very thorough I really think this is musculoskeletal pain. With the help of the referral nurse and Caitlyn's insurance case manager we got her in for an emergency visit with a rheumo. Who if he is nearly as wonderful as his office staff has been so far I will be very happy. They were so nice, calling me three times to let me know there was an issue that they had not yet gotten the referral and then calling me to tell me they had gotten it and calling back to confirm everything.
After this day I really deserve a Pina Colada! :drink:
 
Kim Dear, you need an umbrella, for when it rains, it pours! I hope you can get some rest mentally and physically! Praying all your kiddos feel better very soon.
 
The appt. went well. He was really nice. He spent a long time with us. He thinks the pain is definitely an arthralgia related to crohns. He has not seen pain in this specific area before but has seen other crohns patients.
He wanted to give her a steroid does pack but Caitlyn did not want it. 😞 Not that I can blame her she is sot tired of steroids. He also took a lot of blood to see check her ANA and other factors.
He said she is going to be hard to treat because she is allergic to all the anti TNF drugs so he is not sure what he is going to do.
 
Well at least he has an idea of what it might be.

Any word on the biopsies? I would hate for you to have to go through the weekend waiting. Surely the must be back by now.
 
CIC,
They said 10-14 days, I also know their office won't call with those results. We have to wait for the appt. But I am pissed that Caitlyn's MRI from Wednesday has not been read yet. That is ridiculous!
 
Just curious - why would he use steroids for arthalgia? That's not inflammation, right? Just joint pain?

Has she tried PT? M always said PT did not help till we found a good physical therapist, who knew arthritis and chronic pain. Then it began to help.

Heat, ice, TENS unit.

Voltaren gel if she can't take NSAIDs (if her GI is ok with her trying an NSAID for a few days that might help).

Sending HUGS :ghug:!
 
ARTHRITIS AND JOINT PAIN
Aching or pain in the joints (without swelling) in inflammatory bowel disease (IBD) is called arthralgia. Between 10% to 20% of people with IBD have joint pain at some point. Arthralgia can occur in various joints of the body, such as the knees, ankles, and hands. IBD-associated arthralgias do not damage the joint. Arthralgia is often relieved by treating the active symptoms in the gastrointestinal (GI) tract.
Arthritis, or inflammation (pain with swelling) of the joints, is the most common extraintestinal complication of IBD. It may affect as many as 30% of people with Crohn’s disease or ulcerative colitis. Although arthritis is typically associated with advancing age, in IBD it often strikes younger patients as well. In addition to joint pain, arthritis also causes swelling of the joints and a reduction in flexibility.
It is important to point out that people with arthritis may experience arthralgia, but many people with arthralgia may not have arthritis.
Click to expand...

http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Kim, according to CCFA, treating the GI symptoms may help the arthalgia. I know she's on Entyvio but is there anything else they can do?

You have so much going on - when it rains, it pours huh?! Thinking of you all :ghug:.
 
Last edited:
10-14 days?! man! Things really do move slow in the south! T had scopes at 7:30 and by 3 p.m. the next day the GI had results. They also call if the results are definitive Crohn's to get treatment started right away. They also schedule a follow up appointment for a few days after scopes at the same time that they schedule scopes.... to go over biopsy results next steps etc. Do you have a follow up appointment scheduled? If not I would get that now so as not to delay any further.

I know you are distracted with Cait's goings on but....

FWIW - we are dealing with joint pain for T as well and so far the theory is arthralgia associated with her Crohn's and everyone's opinion (GI and Rheumy) is that we first have to get T in good, solid, remission as evidenced by clean scopes and biopsies and then hopefully joint pain will disappear. If not, then pursue treatment options for the joints with rheumy...lots of hoops to jump through but I get it.
 
I agree with Maya
Ds has arthralgia myalgia and arthritis
It's Joint tendon enthsitis pain with out inflammation .
It can be cause by crohns though
Steriods would only be fore arthritis or Gi inflammation
Not arthralgia
 
In our experience, we've been told arthalgia and myaglia are joint and muscle pain respectively. No inflammation.

If she has inflammation, then it would be called arthritis. Then his comment about the steroids and the fact that she's allergic to the anti-TNFs makes sense.

They would never use anti-TNFs just for arthalgia.

Also, my older daughter has had a dose pack before and she didn't side effects with it the way she did with long-term steroids.
 
Our Rheumo tends to give steriod bursts(4-5 days ) as well
He also gets those for asthma flares
No side effects that way
 
I know the side effects are much less with the steroid burst pack but try convincing my stubborn 18 year old.
He also did say that getting the crohns under good control would help with joint pain. He was concerned though that she keeps getting swelled pinky toes and some of her fingers keep swelling and getting really red around the joint in the middle of the finger.
 
Kim that sounds like peripheral arthritis - particularly if there is redness and swelling.

The issue is that if the arthritis flares independently from the Crohn's, then Entyvio won't help it (since Entyvio is gut specific). Adding something like MTX might help (I know she had side effects with that).

M tried Paraffin yesterday which is supposed to help her hands and feet. MLP's son has had a lot of success with it.

We bought microwaveable mittens online, which M uses when her hands hurt. We got them from: http://www.snuggables.net
 
The finger and toe pain is probably his red flag that it is more than arthralgia and should be treated more aggressively. I'm glad that he is doing more testing. Since she's older, perhaps there are some other drugs that have only been approved for adults that could work?
 
Hope he manages to come up with a plan to help! Here it takes 10-14 days to get a result from an X-ray never mind an MRI - a month probably!
 
So I woke up at 5 a.m. and one of the first people I thought of was your little pumpkin.

I get that you have to wait for biopsies BUT if you wait up to 14 days for those biopsies to come back and then GI decides MRE and you have to wait to schedule that and get results back that could potentially mean that your little girl goes untreated for a month or more!

I can't imagine there is any chance that biopsy results will be enough on their own to move to treatment. Even if biopsies come back as Crohn's it will be considered mild due to the lack of visible disease but meanwhile her small bowel could be a mess and you would be under treating.

So in the interest of time, I would go ahead and schedule an MRE and best case the biopsy comes back clear, you cancel MRE and make someone on the cancellation list very happy.

How is she feeling?
 
CIC,
She is doing okay right now. She complains of stomach pain on and off but that is pretty much it.
We see the doctor for Caitlyn tomorrow and I will ask him if the biopsies Re back yet for the other girls. Hopefully they will be.
 
Oh I hope he has those biopsies back! Waiting this long is inhumane! When you look up patient in the dictionary I bet there is a picture of you!

I hope the pain is more off than on and isn't too bad!
 
Good luck tomorrow. The waiting sounds crazy and I'm so sorry it takes so long to get the results back.....Hopefully tomorrow is the day of some good answers. And, if not, as least you'll have *some* answers to go on.....
 
We actually had the appt. this afternoon. But guess what? The results were not back yet! The Dr. Was quite surprised they were not back yet. He put a call into the lab to see why they were not back yet. He promised he would call if he gets them before the other girls follow up next Monday but I am not holding my breathe. I like this doctor but they are terrible about calling with results.
 
Exactly where are you going???
A week is a long time for biopsy results
Never more than that .
Are you calling in the morning for the results ?
Waiting for a doc to call back - doesn't happen too much unless you call to remind them
They have lots of patients
You only have your kids

I can't believe they are making you wait this long for two kids

Forgot to ask
How did C appt go?
Any mre results ?
 
Her appt went well. The MRE looks good. They were not able to visualize the anastomoses area well. That is the area of concern from the colonoscopy. He wants to repeat a fecal Calprotectin in a few weeks to see what it comes back as.
He is pleased that she seems to be doing much better on the four week entyvio schedule. The chest pain improved about four days after the entyvio so he really thinks it was a crohns arthralgia as well.
My fingers are triple crossed that the entyvio seems to be working finally. Lastly we discussed the pain management program at the Cleveland clinic in Ohio. He is going to look into it and we will discuss it further at the next visit in one month.
 
insanity! This doc is driving me insane! Biopsied never take this long and hello I get that have lots of patients but you have 3 kids. He did two scopes in one day, Caitlin has been a difficult case, he told you likely crohns for your little one. How did he forget to look for those biopsies? Any new probable case of ibd should be followed up on closely so you can get the poor kid treatment.

Sorry. I know you like him. I will calm down now. Did you ask him about an mre for your younger one? Can he at least get that started?

How was the c discussion?
 
CIC,
He wants to wait for the results. He said though they should have been in by now so he was upset they were not as well. Just praying he calls with them.
 
Well I volunteer to be the one to keep him on task!

I just don't get how biopsies are going to give him the full picture to decide on treatment.

Clear biopsies = MRE to look at small bowel

Crohn's in biopsy + clear scopes = if you don't look at small bowel, risk of undertreating more severe disease further up

I just don't get a lot of these docs lately. Maybe we should invite them to a Parents of IBD Conference...MLP will be our keynote Speaker!
 
I'm so glad he agrees that the Cleveland Clinic program will help. M was absolutely dreading it and ended up loving it. You first go for an evaluation, where they decide whether the program is the right fit for the child. If they think it is, then you can talk about scheduling it. It's generally 3 weeks, but some kids stay longer if necessary.

Good luck - hope you hear about the other kids' biopsies soon.
 
Glad the Entvyio is helping. Frustrating about the biopsies, hope he calls soon. Nothing like waiting in limbo.
 
:voodoo:The doctor just called with the biopsy results,
Daughter number two is negative for crohns, the other test he did on her is not back yet.
Daughter number three is positive for crohns. :(
It is mild. He wants to start her on Apriso and monitor her with another fecal calp. In one month.
 
Really sorry to hear that your little one has Crohn's, Kim. Is he going to do an MRE to see if there is disease in her small bowel?

Thinking of you guys :ghug:.
 
I'm sorry too, but I'm also going to say that there is something for having the "devil you know". While I wouldn't wish sibs with Crohn's on anyone, I certainly know a lot about it, how to handle any issues that come up, the staff members at the hospital, etc. Small consolation, but we'll look for any silver lining, right?

Hang in there
 
Really sad for you. I hope the kids support each other on the way. How old is your youngest? How is she handling the news?
 
We have not discussed an MRE yet and even though I was kind of expecting these results I still felt so ill when he gave me the news that everything left my head and I forgot to ask him. I will call Monday and ask him.
She is seven.
Sudsy,
You are right about the devil you know. That is very true.
 
Big hugs
You shouldn't have to ask
Mre at dx of crohns is the automatic standard to get a baseline for extent of disease
Try not to wait more than thirty days for the 5-Asa to work
 

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