Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Parents of Adult Children with IBD Support Group


 
07-23-2015, 11:23 PM   #31
theresad
 
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@tesscorm thanks for such a nice response - I really can't tell you how much all of you guys have done for me in terms of support. I just know all my experiences are The same as what you all are also going through, and for however hard this can be, I feel like somehow we're all in this together. And that gives me a lot of strength. It's hard to explain, but thank you guys for being here 😄
07-26-2015, 09:27 PM   #32
Maya142
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Love the post - so true, every bit of it. These kids are very strong and tough and brave and I sometimes think they handle it better than we ever could.
Seeing a therapist really made a huge difference to both my girls. The younger one has had a very hard time and lives in a lot of pain - has trouble walking, sleeping, sitting and getting through school. We're trying to find medications that work for her, but until then, her psychologist is worth her weight in gold for helping M deal with all this.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-29-2016, 09:11 PM   #33
CD mom
 
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∑ Stoma
Struggling. My son has lost response to all meds. He had 2/3rds of colon removed. Due for a reversal soon. However, he has frequent obstructions due to a stricture, has an abscess that's very painful, and now developed Hep B. Drs say it's a complication due to either meds or the millions of injections. He is now on disability and food stamps. Still determined to get a masters degree, but has been forced to drop out of college 7 times. He now lives his sister and her family. He is a walking skeleton. Much pain daily. No social life. Nothing. He goes to Mayo for treatment, has been going there since he was 14. He was diagnosed at 7, now 24.
I'm so scared for him. If this reversal doesn't help him... He told me that since life has nothing for him, and Crohns robbed him of any sense of a happy childhood, then screw life! He right. His childhood was spent throwing up, in pain, surgeries and many hospitalizations. It's as if everything has just peaked...we've climbed a mountain together and there's nothing on the other side. The docs at Mayo are great, but they explained to us 10 years ago that he was highly refractive and in a very high risk group. Now the hepatitis has thrown in yet another complication. Fistulas too!
Now that he's an adult, he knows. He knows what the score is. He feels very betrayed by his body and life in general.
I'm sorry to be so negative and sad. I'm just scared. Scared he will give up. Scared he will lose the rest of his colon and more intestines and Crohns will continue to ravage his body.
Arthritis and now high blood sugar. It. Just. Won't. Stop.
08-30-2016, 06:35 AM   #34
Clash
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I'm so sorry to hear of your son's struggles with this insidious disease. Refractory CD is so unforgiving.

I have a niece (not blood related to my son who has CD) who has been refractory. She has endured numerous surgeries, steroid dependency and hip replacement due to this at age 29, several bouts of sepsis. For several years she spent more time in hospital than out. All meds have failed her so far. She now has no colon left and luckily her disease has never shown up in her small bowel but she still struggles.

My son was diagnosed at 15 and at 20 he has yet to find a med to control the inflammation. So far, remicade and humira have failed him and we are now on stelara. All of these have been in addition to mtx(he also has JSpA). He has had an ileocecetomy and now has the disease from anastamosis site throughout colon and rectum. It breaks my heart that we cannot get this disease to abate. Fortunately, since before surgery he has been asymptomatic which can be both blessing an curse because it makes the CD master silent and with each scope our hopes that remission is in our grasp is dashed.

I truly hope your son finds remission and relief soon. Has he looked into support groups or even speaking with a therapist to help deal with the emotional side of this disease?
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-30-2016, 08:52 PM   #35
Tesscorm
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I'm so sorry to hear that your son has struggled for so long and continues to struggle!

Has your son ever tried enteral nutrition (EN)? Either as a short term treatment (in addition to his meds) or as a supplement? Although exclusive EN (fluid only diet) for 6-8 weeks can often induce remission, I am not suggesting that it would be enough to induce remission in your son's case. However, what I'm thinking is that as exclusive EN does provide bowel rest and complete nutrition, it may help alleviate some of your son's pain. During periods of increased pain, perhaps he can try bursts of exclusive EN for some relief. (Of course, check with GI before trying this - I'm not sure what impact there may be on hep B or high blood sugar.)

As a supplement, he could add one or two shakes per day to his regular diet to help gain some weight and nutrition. Malnutrition can also affect emotions and a boost of nutrition may help your son feel a bit better emotionally as well. (Although, I do understand his disappointment stems from much deeper issues than simply a limited diet. )

Your story, and your son's, is heartbreaking and I wish I could offer more advice.

I also agree with Clash in that it might help if he is able to reach out to a support group or a therapist.

When is his reversal? I hope it goes well and he is able to achieve remission!
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Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-06-2017, 03:11 PM   #36
christine richter
 
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Hello,

I have been reading all your stories of your children with crohns/colitis, and am so sorry you are going thru the same stuff we have been.

Our son was diagnosed at 13, surgery at terminal ileum age 18, remicade now after a 9 month flare.

He finished 2 years of college but has been too sick to do school or work this school year.

I agree that this illness is a full on loss, for everybody. Lost dreams, friends, jobs, school, depression, anxiety. I am thankful he has a supportive girlfriend who loves him dearly: he can be pretty cranky.

Thank you for being here; it means so much as it all gets overwhelming sometimes.

Chris
03-28-2017, 11:08 PM   #37
Mommabear
 
Join Date: Jul 2014
Location: SF Eastbay, California

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Hello,

I have been part of this forum since my son was diagnosed two and a half years ago, and found it super helpful in the beginning. I am fortunate because my son is actually in remission, so I don't understand why I can't simply relax and forget about this disease, but it haunts me. I've been spending these last two years learning, supporting and watching potential cures unfold. When I read about others who are so much worse than my son, it also makes me want to fight. I hope someday soon this nightmare for us all will be over...

Last edited by Mommabear; 03-29-2017 at 01:58 AM.
04-05-2018, 10:46 AM   #38
Pokeymom
 
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Location: California

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Is this sub forum still valid? No current posts?
04-05-2018, 11:03 AM   #39
my little penguin
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pokeymom
A lot of parents are on the parents of ibd kids subfotum
Since a lot of the ďkids ď
Started out young enough but are now in their twenties
Etc...college and beyond
So you are more than welcome to join there

Mine is 14 but was dx at 7 so a very long time ago
http://www.crohnsforum.com/forumdisplay.php?f=49
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DS - -Crohn's -Stelara -mtx
04-05-2018, 12:13 PM   #40
Maya142
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Yes, join us on the parents' forum - my kiddo started out here at 16 and is now 21 !!! Lots of "big kids'" parents are on there.
06-12-2018, 06:18 PM   #41
Mishoga
 
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Location: Gallatin, Tennessee

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Hello, my son is 23 and was diagnosed with moderate to severe Crohns at 11 and started Remicade at 12. Heís been on Remicade since.
I struggle emotionally everyday since heís been diagnosed. This disease has turned and changed our family terribly. We have good days and times of great concern. Iím thankful that he pretty much has been in remission since being on Remicade but Iím always worried about it not working. I feel like itís a ticking time bomb right now.
Iíve never joined support forums because everyoneís stories scared me. Iím a bit of a worrier, as is my son.
He lives with us and lives a pretty normal life for the most part except the disease did change the fun loving child he was.
Now I feel I need to reach out to other caretakers as Iím feeling very alone. I canít share my worries with anyone. They donít understand because he looks healthy from the outside. But as we all know, everyday there is a new challenge. I sit with friends listening to them talk about their healthy children and their full lives. Inside Iím so sad.

He recently traveled to NY for a visit and upon returning caught a cold. Usually he can fight it off. He was on the tale end of his cold and he received his Remicade treatment. That day he started a new job that involved working in an extremely dusty warehouse. The dust started to aggravate his Lungs/chest so we told him to not go back (heís still continuing his studies in college and is on break). Well the cold (if that is what it is)is not going away. He has sensations of a heaviness in his chest. We wanted to him to see his Gastro Dr but he went to a walk in clinic with a physicianís assistant. They said his chest was clear (no X-ray)and prescribed an inhaler. My son says itís not allergies. We want him to see his gastro and heís still insisting on going to a regular doctor so he can get an X-ray. I can see heís concerned but he always waits for the last minute to tell us the details of whatever is going on.
I did some online searches and found information about crohns medication and lung disease. Scared the crap out of me. I donít even want to tell him. When he gets really down he says my life sucks and I donít want to live.
All I want to do right now is cry. This disease wrecks havoc on the body. Itís bad enough we all have to worry about cancers from these meds but to worry about eyesight and lungs......itís never ending.
How do you all deal with the stresses of never ending medical issues? I sometimes feel like Iím not strong enough to be the rock.
06-17-2018, 10:06 AM   #42
Mommabear
 
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Location: SF Eastbay, California

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Mishoga, my heart goes out to you! I know this feeling of loneliness all too well! I donít think others can possibly understand what we are facing as parents. They donít understand the constant worry and how we must watch them suffer without being able to do anything to relieve it. We have absolutely no control. When they are little at least we can control a few things... As adults, they make up their own minds and choose their own paths. Some parents have some influence while others must stand by and watch, helplessly.

Isnít it crazy that something so minor, like a cold, can be so damaging to those on immunosuppressants! I think the inhaler is good. He must use it as prescribed. Also is he taking vitamin D, K and magnesium?
06-17-2018, 10:16 AM   #43
Maya142
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Mishoga, I'm so sorry no one responded till now. I would encourage you to post on the Parents of Kids with IBD forum. That gets a lot more traffic. There are plenty of parents with college age or young adult children on the forum. They're still our kids, even when they think they are grown up .

If your son is so depressed, is he seeing a psychologist? Or a psychiatrist? I would suggest seeing both. My daughter has struggled a lot with anxiety and depression and her psychologist has been wonderful. My daughter really resisted seeing a psychologist but once she did and got used to going, it was life changing. Now my daughter looks forward to seeing her.

It is VERY hard to watch your young adult kids suffer and feel powerless. I would talk to him. Tell him you're concerned. Tell him you love him and you want him to live a life he loves. Tell him you will help him get help. It is hard enough being a young adult - being a young adult with a chronic illness is extra hard. He needs to learn how to cope, which is why seeing a psychologist is so important.

Is he on MTX too? That can cause lung issues but rarely. With Remicade, you do want to do a chest x-ray just to make sure he doesn't have pneumonia if he hasn't been able to get over this cold.
06-20-2018, 10:09 AM   #44
Tesscorm
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Mishoga, unfortunately, it doesn't seem this thread gets seen as often as some of the other subforums/threads. So, I hope you weren't discouraged by not getting quicker replies! The parents on the kids' forum are great and, even though my son is now an adult, I've been here for years and it's still the first section I go to!

Now, about your son... my son has had similar experiences. He is in his mid-20s and has been on remicade for approx. 5 years. The last couple of winters he's had a few respiratory problems that were a bit tough to kick. As with your son, it would start with a cold, settle in his chest, developed into bronchitis and then seemed to 'stick' (or, would just get better for a week or so and wud come back). He took antibiotics (more frequently, for certain, than I was happy with!!) and also used inhalors. He had chest x-rays too. He'd also get very frustrated and blame remicade/crohns.

However, this past winter was completely fine! I don't doubt remicade contributes but I have to wonder if it's also the environment (he was away at university but was now back home this past winter), if it's also the way he took care of himself being away (ie not dressing warm enough/eating properly) and his exposure to so many others by living at his residence??

I did eventually let his GI know what was going on. He was 'mildly' concerned but only to the extent that he wanted my son to stay on 'top of it' and to be informed if it continued or worsened. However, I don't mean to imply that there was 'no' concern by his GI. One x-ray had shown 'something questionable', I immediately contacted his GI and his GI had him redo x-rays at his own hospital. All was fine.

Also, while it's so incredibly easy to worry and panic, try to deal with one issue at a time. Treat the symptoms, take the meds, track if it clears or doesn't, etc. but try not to be overwhelmed.

If it's possible, try to get him to see his regular dr (opposed to a walk-in). My son was alternating between the local hospital's ER and walk-ins so wasn't getting consistent care. As well, the small 'university town' hospital and walk-ins were inundated with lots of other sick students and I'm sure, at times, their response/treatment was just 'typical'.

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