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07-23-2015, 11:23 PM   #31
theresad
 
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Join Date: Nov 2012
Location: Chicago, Illinois

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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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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?
__________________
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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Join Date: Jun 2011
Location: Ontario

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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!
__________________
Tess, mom to S, 22
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
 
Join Date: Jun 2016

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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.
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