How are the parents of kids with IBD coping?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

:hug:..I'm sorry your finding it hard to cope. It's not easy having a sick child.
You might need to go back on the anxiety meds for awhile.
I find the best thing is a good cry...Please take care and remember we're always here for you.
 
I am so sorry to hear about Marni. I know your heart just aches.
One thing you dont have to worry about is school. I was the same way, but even the principal kept telling me, its just middle school. I am going to tell you, its just elementary school and she is going to make that up just fine. You can get a lot done when she is feeling well again.

You take whatever you need to help. We do understand!! Looking back, I wish I would have taken something. IF you want something more natural you can try St. Johns Wort and Camomile tea.
sending lots of hugs to both of you and grandma too.
 
Thanks upsemom and julie. I posted that at 3:30am. She never did sleep. In the bathroom all night. An hour or to on, five minut, then two hours on, five minutes off. I finally dozed off at about 6am and was awakened at 7 by her calling me for help to get off the toilet because she was so weak. She fell asleeo until 8:30 and just ran back to the bathroom. I'm so tired that I have a dull headache. I would try to take a nap before I go to work. But I feel guilty sleeping when she's alone in the bathroom. I'm taking her to the hospital this afternoon. No one gets any sleep there. !!!!!!
 
(((((hugs))))) Im so so sorry she's in so much pain and feeling so awful :( The worst feeling in the world is watching your child suffer and not being able to do a thing to help them. I hope you guys get some answers soon.
 
Marni's Mom, Just a guess, but if she's in the bathroom that often could the pain meds not even be absorbing? Can you crush them? I'm so sorry you're going thru this. When you don't sleep the anxiety becomes a beast! I also worried about school during Brian's worst flare. He missed over a month all at once. Our school worked with me to do his work at home. That relieved some stress for me and my son. But if your daughter is feeling so horrible...then just put the school worry aside. She'll catch up sooo quickly when she's feeling better. What meds does your doctor have planned for you guys? (If it was posted, sorry I can't remember)
 
Yes, school is the last thing to worry about although I know that is hard because all these thing just keep running through your mind. Hospital is probably the best place for her right now and she will get constant monitoring.
It is so hard when the tests do not reflect what your are seeing, but obviously there are things going on especially if she is getting up all night and spending it in the bathroom.
Keep us posted, try and get some rest (I know better said than done).
Once you get Marni through this maybe plan some special time with your other daughter but for now just acknowledge that you understand this is difficult for her as well.
We are here thinking and praying for you and sending lots of ((Hugs)) and just think of us all standing right behind you supporting you.
 
I'd be right like you - a basketcase. My daughter isn't even that sick and it is hard on all of us. I use Serenity and other essential oils to help me sleep and be able to function, and I come here or try to do other enjoyable things. When things improve, then so do I. I feel for you going back to the hospital. I hate it there. It will help by getting all those tests done in a timely manner, though and will allow others around you to see that they need to kick into their support Marni and Stacy mode :). I hope she starts feeling better soon and that the tests show everyone what is going on so that it can be fixed. <<<Hugs>>>
 
Marni's Mom, you poor thing!

Think you should take what ever you need to get you by and be strong for your girls.

I really hope she feels better soon.

:ghug:
 
Thanks everyone, for the encouraging words. We're at the hospital now, and she is on Morphine. She's actually laying quietly in bed, ready to finally get some sleep. We have plans for tests, scopes, etc in the coming days, but right now, the focus is on pain control. I already feel more peaceful because she does.

Our doctor even told the nurses to NOT come in at all during the night to take vitals or give meds. It's all about rest right now.

Kathy, I do actually crush her pain meds at home and mix them with a little water and give it to her via her mickey button. Usually, she feels better within about 15 minutes and gets sleepy, and sleeps so deeply that I can't wake her up in the morning. The past couple of nights, the med (Tylenol #3) hasn't even touched the pain. The feeling of having to go to the bathroom all the time is because the most distal part of her colon (rectum) is so inflammed. The inflammation is making her rectum think there's stuff in there that needs to be pushed out. So, she runs to the bathroom. And, of course, that feeling doesn't go away even if she does go some because the inflammation hasn't gone away. The steroid enemas are supposed to help with that, and she will be getting them three times a day while here starting tomorrow morning. Tonight...she just rests. Oh, look! She's asleep. So that's what that looks like. Aaaah.

Thanks again for the hugs and support. You are all awesome.
 
Hey Marni's mom...:hug:...you know yourself better than anyone so do whatever you need to get through this hun. :heart:

Having been through the acute times and the remissions I think I have realised I no longer stress the small anymore and instead my priorities have shifted. In many ways I have found coping just as difficult in the good times as the bad. When my children were ill I found I was actually able to focus better as the fears and worries were tangible but when they achieved remission I started to fear at how fleeting the good times may actually be and that was harder to deal with because I was battling my own demons. However the plus side of remission is that it buys you breathing space and with breathing space comes time and that in turn leaves you realising that you haven't thought about Crohn's for a few minutes and then a few hours and then half a day and then almost a full day! I can't say I ever go a whole day without thinking of it because I know I won't and I don't think that will change for the rest of my life but that is okay. :)

I hear you all and your fears and worries...:ghug: Thinking back on how I coped I know I dealt with it in two very different ways. Firstly I threw myself into researching everything I could about Crohn's and more specifically the aspects of the disease that affected my children and secondly there was the wind down. To do that I came here to the forum and spent a fair bit of time posting in the members section where there was plenty of chat and laughs. The other wind down was rediscovering what I found relaxing, it's not hard to lose that when you start a family! For me it was and still is my iPod. In my mind there is nothing better than putting those earphones in, blocking out the world and listening to your favourite artists...pure bliss! :) I know it can be hard to achieve these things at times but sometimes just knowing they are there can be a comfort.

Living this disease day in and out when our kids are flaring is a bloody hard slog. If there are any words of advice and comfort I can give it would be to take each day as it comes, there will be good days and bad days for our kids and good days and bad days for us. Above all else be kind to yourselves, we are only human and as far as I am concerned there is nothing harder in this world than watching your child suffer and knowing you can't take it away. Not to mention the heartbreaking decisions we have to make on their behalf.

So here's to all of you and the wonderful job you are doing. Well done! :cheerss:

Dusty. :heart:
 
Sleep can only be truly appreciated by parents of the chronically ill.

Hugs to you. Your doing a great job.

Update when you can.
 
Hugs Marni !

I'm happy to hear she is resting finally.
I hope you've taken it upon yourself to rest when she does :hug:
 
Peaceful dreams to both of you. I hope the hospital staff will respect that need for your rest and recuperation (both of you!) Is there a bed in the room for you too? Hugs!
 
So sorry to hear that Marni is in so much pain. It is such a hard and devastating thing to watch your child in pain and not be able to make it stop. I understand the desire to have the tests find something tangible. My son had chronic pain for many months which was not supported by test results. All I wanted was for them to find something that they could fix. I hope that they are able to help her at the hospital and that you both get some relief.

As for school my advice would be to not worry about it. My son missed well over 50% of his grade 5 year. I worried myself silly over it. Now that he is more stable I can see that my worries about school were silly as it is just school and it can be stopped and started as needed and the far more important thing is getting our kids better. However, I think school, and not going to school, became my daily reminder that things weren't good. I was desperate for my son to be able to go to school. But looking back I think that desperation was not so much about missed school work as it was a desire to see my son better and subconsciously I was using his ability to go to school as my benchmark for that. From what I have seen on the videos you have posted you have a very bright and vibrant daughter. When she is feeling better she will catch up in no time.

:ghug: Hang in there and get some rest when you can.
 
I agree with everyone else re: school. Do not worry about it. Even in 7th grade, my son's teachers would send him emails telling him to take care of himself first and not think about school. He was exempted from many assignments except the ones required by the state in order to move on to 8th grade. The only thing we did do was pick up homework from teachers simply because it was a boredom buster while in the hospital.

Does your daughter have a 504 plan in place? If not, that is something you will want to do when things settle down. I think quite a few off us here have them for our kids if you need help or advice.

I hope you're doing ok and getting some answers... and sleep! Remember when they were babies and we were always told to "sleep when they sleep"? Great advice for times like this as well.
 
So sorry to hear about your poor girl! And you trying to cope! I hope they manage to get somewhere with this hospital stay.
Just wondering (might be completely wrong) but have they ever done a laparoscopy - gone in through the belly button with the camera to see if there is anything showing on the outside of the intestines, etc. It's just with the level of pain she is experiencing, you would think there would be a little more to show for it - although maybe there will be this time. Maybe she has some ulcers/irritation on the outside that isn't being touched by the enema.
Good luck!! Hope they get to the bottom of all this.
 
You all have been through it! Lack of sleep when thing are terrific (when was that again? :) :)) is trying much less with what you all have going on.

I hope that sweet girl and her momma can get some relief!!!!!!

J.
 
Man, can I relate to all your comments. When Matt is even slightly uncomfortable, sleep is not a possibility for me. The stress? Immense. I have to be honest, I dont know how some of you do it. I feel like I am barely managing sometimes and not to minimize but Matts concerns seem so minor compared to what some of your children go through. I find myself feeling sick to my stomach that he's UC, but so thankful that, for now, it isn't Crohns.
It's helpful to know that we're all not alone...and despite the fact that it seems that 99 % of you are moms..I feel right at home here as a Dad. Thanks for welcoming me last year. Keep your heads up!
 
Last edited:
You are all SO amazing! I can't tell you how much I appreciate everyone checking in on me. Wow. And you all have so many good suggestions and questions.

I think I'm going to start a new thread just to update on Marni right now, because I don't want to hijack this thread for Marni's status, but rather keep it for us to talk about own coping issues. I have found this thread to be a great comfort.

Thank you everyone.
 
As a sixth grade teacher, I agree- don't worry about the school work.

Are you taking anything at night to help you sleep? Even something over the counter might help. I take Trazadone at night. It's a mild anti-depressant with the side effect of drowsiness. I feel less drugged on Trazadone than Tylenol PM. Also, I don't mind feeling a little happier falling asleep. I do think the first hour of sleep is very deep, so I don't know if you'd feel comfortable with that. If you need to be up during that first hour, it might be too difficult.

Hugs!

Kimberly
 
All of your stories are so familiar! I am beyond exhausted, can't stay asleep and when i do have the weirdest dreams, ugh. My son is 12 and has Crohns and EGE, we can't find a solution to make him feel better and it's so frustrating! I'm on the internet all the time, or in the kitchen cooking food he can hopefully eat, trying to find a holistic way to heal him. He's on pentasa now and it's not working, and neither is diet. I just want to cry and scream. I just want to hear the words "i feel good today mom" and I don't. I have my sister and some freinds who ask and care so I'm lucky but I'm truly shocked at the people who I thought were friends that don't ask. WTH? It makes me mad. DS is now home schooled and it's like no one noticed he's gone. GRRR. Thanks for listening and being there time and time again! I feel better
 
I'm so happy you said don't' worry about school because that is another thing. I put DS on K12 and I thought it would help but I swear it's worse!! There is way more work than regular school! And he is too sick to do school on many days. I think we need to switch. Plus I'm in school and work f/t. Any suggestions on online school?
 
Gingermom
Has he ever been seen by cchmc, chop, or Bch ?
Is there a reason he is only on pentasa ? That is a very mild med which does typically not induce remission in CD patients.
Most kids need an immunosuppresant such as 6-mp or Imuran .
Hugs
 
I really wanted to try using the diet to put him into remission and the doc is on board but i don't think it's working :( I really didn't want him on 6-mp but that's next step because he just has to feel better. Have not been to cchmc, chop or bch. I took him to Stanford before putting him on the diet. But I think I have to put him on the 6-mp.
Hugs back
 
One thing to keep in mind 6-mp takes at least 4 months sometimes 6 months before you can see results .
Typically you would know if pentasa was working after a month.
Most Gi will meat giving pentasa for crohn's is like taking aspirin for a brain tumor .
Not going to hurt but most likely not going to help alot either.
Do not be surprised if he needs pred again while waiting for the 6-mp to take over this is pretty standard . One other option to ask about trying EEN ( formula only ) with an elemental ( neocate or elecare) until the 6-mp takes over .
EEN is used to treat egid and Ibd .

It's never easy
 
Gingermom, When my son first showed signs and we were told it was crohns I fought that DX with everything in me. I tried all kinds of diets. He was only 6 at the time. I put him on a gluten free diet and he seemed to get better. He had 'logs' (I thought that meant better!). He seemed to be cured and my husband and I celebrated that. We didn't return to the GI and they never called (of course). I'm embarrassed about this now. He didn't grow much. And then the Diarrhea returned at age 10. We are SO LUCKY he didn't have any serious damage. (Strictures)
I guess my point is...I don't think diet alone cures this beast of a disease. I OFTEN wonder how big he'd be if I had listened to the doctors when he was 6. He obviously wasn't absorbing nutrients. And would his disease be this advanced if we had had it under control all those years?
I'm not preaching...just want to help if I can. I also know every case of crohn's is individual and I can only speak about my experience.
 
My two cents:
I agree with MLP about the Pentesa...we have been advised by our GI who I find to be very knowledgeable and trustworthy...that Pentesa is NOT enough medication for Crohns. Also, he explained that when IBD presents in a child it is generally a much more severe version than when it presents at adulthood. He is very skeptical of controlling the issue with diet and denies having seen any children patients where this has been successful.
We used 6 mp for a period of time for my sons UC....that seemed very effective and he suffered no uncomfortable side effects...unfortunately it did affect his liver...this effect was easily detected in his Bloodwork and we had to stop using it...the liver enzymes returned to normal and we are told this causes no long term damage. If you use 6mp you can also do testing that will show how your child is processing the 6mp and will reveal its effectiveness and the potential likelihood of antagonistic side effects.
You should also research LDN as a possible option, however, LDN, is alleged to be slow working as well......
 
I should add that our son was 12 at diagnosis and our biggest concern other than his immediate health was preventing any delay in his development...puberty, growth, etc.....
We hated the idea of 6mp but we also didn't want to goof around and lose any more ground than we already had in the year leading up to diagnosis.....we ultimately gave in to 6mp with the belief that we were picking the lesser of two evils.
 
Thanks everyone! The plan is one more week on the diet then adding in 6-MP. Will he still need the Pentasa? Doc says yes but wondering how you all feel about it.

I started crying at the doc office yesterday when we made this plan. I must have felt a big load off my shoulders...wish i didn't cry right then but it happened and it's ok.
 
Wouldn't hurt to keep on Pentasa for the time being - 6MP takes a while to work and Pentasa can help with surface inflammation. IMHO I'd continue it for the next couple of months and then decide.
 
Yes..continue the pentasa...it's quite mild when compared to other medications...the pentasa works simply by releasing within the colon and coating the interior inflammation...we used both and when the 6 mp failed we simply continued with pentasa. Aside from unique circumstances I believe pentasa is unlikely to cause any harm....
 
Ginger....I see your dealing with Crohns so I want to repeat that my son who has seen good things with pentasa is suffering from only UC....I believe pentasa has not had much success with Crohns.....I'm assuming this is because it releases when it gets to a certain PH and likely only helps the colon....that's my understanding at least, so I would assume the pentasa would only help you if your dealing with inflammation within the colon....
 
Pentasa coats but releases higher up in the Gi track.
Asacol different ph does colon only.
Both Pentasa and Asacol are prescription forms of mesalamine. The difference between Asacol and Pentasa is in the outer chemical coating. Oral Pentasa has a unique formulation. The active ingredient is contained in coated microgranules, which enables a prolonged release of the active substance throughout the intestinal tract, from duodenum to the rectum. Therefore the Pentasa preparation is more useful for Crohn's patients who often have inflammation of the small intestine. The average small bowel transit time is approximately 3-4 hours in healthy volunteers.

Asacol is a delayed release enteric-coated tablets which generally releases the active ingredient only in the colon. While there are always clinical exceptions, Asacol is generally suitable for patients with colitis only (ulcerative colitis or Crohn's colitis), but not disease involving the small intestine.
Click to expand...

From
http://www.gihealth.com/html/education/drugs/pentasa.html
 
That's interesting...I wonder why we weren't prescribed asacol? Since his inflammation was all in the large intestine. I'll ask tomorrow. Thanks MLP
 
Dutch

it may be an insurance thing???
Ds was on both but once the second scope showed rectal inflammation GI switched to asacol in addition to other maintenance meds.
 
Gingermom - I have been where you are! I put off the 6mp as long as possible as my son wasn't having many symptoms. We are now on week 4 and so far no side effects apart from a bit of tiredness.
 
I am so glad I found this forum. It is 2 years since my son(m=now 14) was diagnosed and it was a huge shock. I only found this forum a few weeks ago and it is such a help. My son was diagnosed as I career changed and was training to be a primary school teacher so time off was not an option. I managed to qualify, did my NQT year and am now in the next year from that teaching 10-11 year olds full time. My parents are amazing! My job helps me keep some normality and we have had some tough times but talking about it and crying about it together has helped. I have a close relationship with my son as he is our only one. His ability to cope has made us cope even in the really really tough times. I don't get any me time so I could do with less wine and more exercise etc but hey ho that's life!

We are in the Uk and going to Florida in May for our 2nd family trip. The first was the year before he was diagnosed. this time we will do it all at his pace and enjoy the good times. We try to be positive but honest and are now in acceptance mode. It is all so hard and none of our kids deserve this. Wishing you all well x
 
Johnny is actually doing pretty well. They are checking his fecal cal next month and if it is still high we will know the 6mp isn't quite doing it's job. But otherwise he is feeling well.

Now my daughter Brooke is showing signs of crohn's. She had a staph infection in her mouth and the Dr. found healed ulcers. Thinking about having my other child having this disease is just so depressing. Most of the time I can be up beat and count my blessings but lately I am just weary. The thought of dealing with this disease over an entire lifetime with all the endless possibilities will drive you mad. I try not to go there. But lately I have been living there. It helps just to talk about it, and to have all of you.:heart:
 
Okay, I admit it. I'm NOT coping right now. I'm worn thin and feel like I'm almost at my limit. I feel anxious and depressed because I can't do much other than watch my child suffer in pain and feel like I'm failing her for not being able to make it stop hurting and failing my older child because she feels neglected, failing at my profession, letting my house fall apart, etc. Feeling sorry for my baby, who is always hurting. And, I'm embarrassed to say, but I'm feeling sorry for myself tonight. I thought venting would help. It didn't. Anyone else feel this way?
 
YES! I did the first two years of her life. Night after night of crying and being in pain. Day after day of having people say she'll grow out of it. Now I live with the guilt of knowing I should have pushed harder.
I know Marni is a different case than most (sorry) but your coping the best you can, even when you feel like your not. Hang in there mom, we're here for ya. Pm anytime. HUGS
 
Been there, hon...it's a tough road, for sure, but hang in there, mama!!! I spent many a night in front of my PC sobbing, for Izz AND for me, depending on the night. Therapy, wine, working out...it all helps. It's so hard when they aren't doing well to be positive and strong. (((HUGS))). I'll be thinking of you today :heart:
 
(((((hugs)))))) Marnismom. We are here any time you need to vent. I know the feeling. I have felt that way plenty of times with Devynn. When she was diagnosed, I felt incredibly guilty for NOT pushing harder. Her symptoms started when she was approx 18 mos and she wasn't diagnosed until she was 8. I'm so sorry Marni is feeling bad :( Its the most awful feeling. I used to wish and pray that whatever was wrong with her, I could take it and make her better. (((((hugs)))))) hang in there mama.
 
Fears we cannot climb become our walls. You are in full on survival mode. This mode happens to me as well... You put on your poker face taking her to the hospital, remained strong through all the poking and prodding, comforted her when the pain was unbearable. You are not failing her, you are probably very tired. When I come home from a big hospital stay, my house is a mess and for days maybe weeks I am not a mother but a nurse just doing her job. It happens. People tell me all the time at that I am a great mother and how strong I am. We do what we do because it needs to be done, we love our kids and we want them to be their best. Unfortunately sometimes we fall on the trail and forget how to dust ourselves off and this is where you are I think. These moments are when I pray the most. I don't pray because it makes sense to do so, I pray because my life doesn't make sense most of the time. Take care! You are not alone!
 
Marni's Mom

I think we've all been there, use your friends, family, anyone who will listen! You need to be able to take some time for yourself, even if it is a hot bubble bath with a large glass of wine.

Sending you big ((((HUGS))))

Chin up hunny, stay strong xx
 
YES, I have definitely felt this way. There is nothing worse than seeing your child in pain and having no clear way to make it better. I get a sinking feeling just thinking back to that time. Nothing I did helped tremendously but an occasional run with a friend (really an excuse to go out for coffee/breakfast) and trashy tv or books were my go to activities when things were really bad. For a long while I felt like my mood was entirely dependant on how my son was feeling. If he was feeling good I was ELATED and if he was feeling bad I was DEPRESSED, the swings between the two where frequent.

:hang: you are doing the best you can!
 
Lately I feel like I'm just obsessing over Crohn's. My son is doing really well right now and seems to be in a pretty good state of remission. Yet... I can't stop thinking and planning for the next flare. Am I crazy??
 
Nope not crazy
Same here every time I think I can relax
Bammmm
He cycles through something again
No one can explain it
Take some time for your self and older child even if its a hour this week
Ask friend family to clean or grocery shop
Just to give you the break
It's hard to ASk for help
But you need it
 
Just wanted to send a hug. Been there! It is so difficult to watch kids in pain! Went through that for both - suppose they both got extra attention at some point last year. Just give your other kiddie lots of hugs whenever you can. They will understand. Housework always comes low on my list when kids sick. So long as my bathrooms and kitchen are disinfected/clean I am happy enough
 
Not strange at all Mehita! Ryan is also at a pretty good state, yet I seem to stay on pins and needles waiting like "this won't last"!It's hard to live your life and allow Crohn's to be an occasional visitor and not take up residence in your head! Hugs to everyone!!
 
One day at a time is sometimes too long...it is one hour or one minute. <3 I finally learned to give myself time to throw a pitty party, cry, yell, hit things (i actually have a punching bag), sulk...whatever it takes. I just set a limit on it. Today or this weekend. I've helped my son do this too and it seems to have helped a little with his anger, too. The fact is we are human and sometimes life sucks. I say this as someone who has incredible faith and it is usually after an hour or two of full out feeling sorry for myself that my faith comes through strongest. The truth is that we DO have reasons to hurt and be afraid and worried. I don't know if there is anything worse than seeing a child suffer. We aren't stone. WE have feelings and if we keep them in and always act invincible most of us will eventually completely come apart. If we can let ourselves be human a little more often, its seems the crash isn't as bad. My Dylan has had such a frustrating year, but is finally seeing some light. I have, unfortunately also been in a nasty flare. We learned that there are very few balls that actually have to stay in the air; most can bounce and will be there for you to pick up later...or they just aren't important. We are still living day to day, but my heart is more at peace when I let myself have my emotions. I'm very blessed to be a glass half full person at heart, so I understand that it is a gift, but generally if I give my negativity and heartache and sadness its time, I can get back to being me. I keep all of you firmly in my prayers. All my best today and every day.:ghug:
 
Hugs to all who aren't sleeping for the thoughts that are constantly churning trying to figure out how to make your child better, to avoid the upcoming tests/meds/other unhappy scenario... Take some time to just be a family some day. Don't be afraid to take time off for things other than Crohn's related problems. This is important too. Go on a field trip with another child's class. Go out with friends or your family and see a movie. Take a date with your spouse and eat spicy, greasy foods! You need to take care of you too! Oh and one more thing. Set at least one day aside to not log onto this board. When you have some down time, it's okay to make it a nonIBD evening or moment too.
 

Similar threads

R
Can kids inherit IBD
Replies
7
Views
2K
Stressedmom
S
M
Fecal calprotectin and NSAIDs
Replies
2
Views
852
Mavvy
M
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
W
Trauma-related IBD and ways to heal
Replies
8
Views
3K
Waldo
W
Papantoine
Neglect?
Replies
0
Views
251
Papantoine
Papantoine

Latest posts

Back
Top