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


 
11-28-2013, 03:36 PM   #1
topperdoy
 
Join Date: May 2012
Location: St. Louis, Missouri

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Parents of Adult Children with IBD Support Group

About this Support Group

I am starting this support group and hope you will join me if you are the parent of an adullt child who has IBD. We are the parents of an adult who we have been caregivers for. Anyone out there experiencing a situation like ours. We can use and share some support for our journeys.

Members

BethP, Catherine's Avatar Catherine, CD mom's Avatar CD mom, Chester31's Avatar Chester31, christine richter, Clash's Avatar Clash, dfyang123's Avatar dfyang123, gardeniagirl's Avatar gardeniagirl, LLbriseno, maxx445, MayaMeager, Mommabear, Mommeran, NancyS, nervous mom, Niks's Avatar Niks, Olliesmum, Osmama, Pink, Searchingforhealth, Ssmom, tabbycat66, Tesscorm's Avatar Tesscorm, theresad's Avatar theresad, topperdoy, UCNanaMom, Veronica A's Avatar Veronica A

Last edited by topperdoy; 11-28-2013 at 04:14 PM. Reason: Too long
11-28-2013, 04:15 PM   #2
topperdoy
 
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Our son is 27 and has Crohn's Disease for over 3 years now. He had to drop out of a Ph.D. program that he had just begun. He has had to move in with us and has spent most of 3 years in his old bedroom in the dark because the light makes him nauseated. He is in pain and takes pain medicine, but, nothing helps the nausea. He is unable to have a life outside of us , the internet, and the telephone. We have a two story house and he rarely comes downstairs as now his joints have begun hurting him. No matter what medicine the doctors give him, he continues to be in pain and suffer nausea. He has seen a number of G.I.'s who say they see no active inflammation, so they don't know what to do for him. Needless to say this is very painful for us as well as for our son. He had such a bright future and has really gotten shot down on take off. We are worried about his future. We are close to retirement age and are concerned what he will do when we can no longer care for him. We don't know anyone in our situation and are eager for support.
11-28-2013, 08:27 PM   #3
Catherine
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Hi Topperdoy

My eldest daughter has been dx with crohn's for almost 2 years. She is 18 years old and has just finished high school and in clinic remission.

There are a few parents with adult children active in the Parent section of the forum.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-28-2013, 10:54 PM   #4
Tesscorm
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Hi Topperdoy,

I'm so sorry that your son is having such a struggle. Regardless of age, there really is nothing harder for a parent than to see their child suffer. I hope his doctors are continuing to look for an explanation as to what is causing his symptoms.

My son is 19 and was diagnosed just over two years ago. He is on remicade and, so far, is doing well with it.
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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
11-28-2013, 11:24 PM   #5
Pink
 
Join Date: Nov 2013
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Hi Topperdoy, I am new to Crohns. My son who is 18 y.o was dx 6 months ago, and recently learned he will need meds.. i.e 6MP, Remicade/ humira. We have big decisions to make. He generally feels well with few symptoms . But his symptoms do not reflect the progression of the disease.So I am concerned that the meds will make him ill. I feel for all you parents out there, who have watched and continue to watch your children suffer.

Topperdoy, do not give up hope! I know this is hard when you are seeing such a drastic change in your son, but I hope there is someone out there who can help you all. Good luck!!
11-28-2013, 11:43 PM   #6
topperdoy
 
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Thank you all so much for your support. This is great to hear from so many people. It is breaking our hearts for our son to not be able to live his life. He was on Remicade for 3 years and that took away the terrible pain that he was in but just left him with enough pain and nausea that he still can't work or go back to graduate school. He went off the Remicade for now because it wasn't fixing those symptoms and he is afraid of all the terrible side effects that can be caused by Remicade. Doctors have really disappointed us and don't seem to have the time of day for him once they don't know what to do for him. It is soooo frustrating.
11-29-2013, 11:38 AM   #7
Tesscorm
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Has he tried other medications? Everyone reacts differently to treatments, so it may have been that remicade wasn't the right one for him??

If he has tried the other traditional meds - immunosuppressants (6mp, imuran, methotrexate) and the other biologics (humira, cimzia), there are other treatments he can still try:

There are other biologics - tysaberi (not sure of spelling) and stelara

Enteral nutrition - often used to induce remission in children but also has success in adults. Even if not able to induce remission, will provide him with necessary nutrients while allowing bowel rest.

Low Dose Naltrexone - few side effects and a number of members have found success with it but not a lot of studies available in its use with crohns (has been used in higher doses for other treatments in the past, so studies on naltrexone are available, just not many with crohns).

Diets - some members have found success with SCD or Paleo diet as well as juicing.

Here are links to the Treatment section (you'll find subforums on most of those I mentioned above) and to the Diet section.

http://www.crohnsforum.com/forumdisplay.php?f=16

http://www.crohnsforum.com/forumdisplay.php?f=17

12-01-2013, 09:50 AM   #8
topperdoy
 
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Thank you for that information. Our son is 27 and he is doing his own research and involved in online support. He is making his own decisions on his journey with Crohn's. That is part of our need for support is that in some ways we have learned we have little power in this situation. We can set limits on what we can do or don't want to do in terms of caretaking our son. We can and do tell him how we feel about his illness, how it affects us and the family. But, we tried for a long time to try to tell him what to do and it only alienated us from him. Anyone else out there struggling with these types of dilemmas?
12-01-2013, 02:27 PM   #9
Tesscorm
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At this point, I can only imagine how hard it is to stand on the sidelines... I've only just begun to experience this... when my son transferred to an adult GI, this GI strongly recommended remicade. MREs did show ongoing inflammation, however, he had no symptoms and the inflammation hadn't worsened since diagnosis. My preference would have been to try low risk LDN, GI strongly recommended remicade to stop inflammation immediately or risk surgery in the future. My son was concerned with the risk of surgery and wanted to go with his GIs recommendation. It was very hard for me to accept but, I felt that, at 18, I had to respect his decision. I gave him all the info I could and let him decide. There were strong arguments to be made for either decision and there is no right or wrong answer, only a personal decision based on the info we both had. But, when you want what's best for your child, it's so hard to lose that control.

I wish I had more advice for you but, as my son is younger, we really haven't encountered this situation more than once or twice.

I'm going to tag in some other members whose children are either a bit older or are going through similar situations - Dusty, Niks, Crohn's Mom ...
12-01-2013, 03:46 PM   #10
Niks
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Hi topperdoy

My nearly 20 year old daughter has suffered over a year now with chronic constipation, bleeding. Abdo pain, that just doesn't go away. Plenty of other things going wrong for her too. Still her diagnosis is unclear, her GI thinks IBS, she was originally diagnosed with Coeliac Disease, but now they are unsure about this! Her doctors also don't really know what to do for her.

I really understand what you are going through. It is so tough seeing someone you love suffer so much. My daughter is going through a referral to a different GI and Hospital, this will be her third! I know that there are plenty of people on here who have had to go through lots of Doctors before finding one who can really help them. Has he considered a second opinion with treatment?

Sending you hugs xxx
__________________
Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
12-13-2013, 12:38 PM   #11
Tesscorm
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Just tagging in CD mom - she may have some thoughts on helping an adult child with crohns.
12-13-2013, 03:47 PM   #12
DustyKat
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Sorry I missed the previous tag Tess.

Hey topperdoy…

I am so sorry to hear your son is continuing to have problems.

It certainly is a fine line between saying nothing and saying too much. I have two children with Crohn’s and as in life such is their approach to their disease. My son is as straight as a die as never veers from what the doctors say, he is more of a ‘I have Crohn’s, accept and get on with it’ kind of kid. My daughter on the other hand has a far more questioning approach and will push and defy. I don’t mean for that to sound as a negative on her part but rather I think she struggles more with the acceptance of the disease and as such will push the boundaries and strives to live with it under her terms, not what the medical profession tells her she should.

With them being older I have found that they have certainly passed the age at where I can ‘tell them what to do’ so when I have had concerns I have spoken with them about it…what my concerns are, why I feel the way I do and why I think it would be best that they take a certain path. I then give them printed information about the topic and leave them to it. I don’t feel that I can make them do anything they don’t want to and I just hope they heed the advice and if they don’t they learn from the mistake of not doing so. Yes, I have had to bite my tongue countless times over the years but keeping the lines of communication open has always been paramount in my mind. So in a nutshell…short and concise discussions (devoid of emotion if possible!), give information for them read and make informed decisions and finally, plenty of space where I am not in their face.

As to your son:
His Crohn’s - He surely sounds like he has extra intestinal manifestations happening and some of which sound like they parallel active disease.
When you say they aren’t seeing active disease I assume you mean via scope? If so that still leaves almost all the small bowel untouched.
Has he had imaging done of the small bowel?
If he has small bowel disease then stricturing (scarring) can’t be ruled out and that will produce abdominal pain and nausea (and vomiting if severe enough). It normally won’t show on any serum or faecal inflammatory markers either. No amount of medication will help and surgery is the only option.

Psychologically - Studies have indicated that up 25% of people with IBD suffer with anxiety and/or depression. Little wonder given the nature of the disease and the lack of understanding in the wider community and for many in their own families, not meaning you here! Due to your son’s failure of response to treatment and the suffering he has as a result of it I think this aspect of things needs to be looked at as well. Easier said than done I know.

I so hope you and your son are able to find answers and he recovers the life he no doubt sorely misses and justly deserves. Lord knows he has suffered enough.

Not being from US I am unfamiliar with the geography of where you are and decent GI’s to help your son. Perhaps ask the question in the General Discussion forum as to where he could go to get the best help and care.

Good luck mum, thinking of you and yours.

Dusty. xxx
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Mum of 2 kids with Crohn's.
12-18-2013, 04:21 PM   #13
everlandfarm
 
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My son is 35 and was diagnosed with Crohn's Disease roughly 10 years ago. Most recently went w/o treatment for @ 6 years. Is now in treatment again and on Prednisone for about a month. I notice that he seems to be developing some yellowing of the skin, particularly noticeable in his face. Has anyone else noticed this side effect of Prednisone?
12-20-2013, 03:58 PM   #14
Tesscorm
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Hi everlandfarm,

I don't have experience with pred but yellowing skin could be related to liver issues.
12-21-2013, 03:40 PM   #15
everlandfarm
 
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Hi everlandfarm,

I don't have experience with pred but yellowing skin could be related to liver issues.
TY for the addl info Tesscorm. Have read that one of the long list of Pred's side effects is yellowing of the skin, especially in the start up month(s) Will take that at face vaule - and come Spring if the yellowing is still present will suggest that a liver function test would be in order. Thanks for your time.
12-31-2013, 02:42 PM   #16
Veronica A
 
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My daughter was first diagnosed with UC back in 2010 while she was away at college. The hospital she went to didn't start treatment and so she went untreated for several months. After many months of pain & suffering I brought her home after she graduated and got her to a specialist. He re-diagnosed her with Crohn's. She has had a rough go of it - trying to get off the steroids so she can get her treatment shots, then she would get an infection so she couldn't get her treatment shots because she had to be on an antibiotic. It was one big huge circle of dealing with pain and illness. I felt so helpless. She soldiered on - worked full time, took ballet & tap back up and even enrolled in Grad school this year (after 3 years away from school). Then disaster struck in July of this year. Her colon was inflamed and abscessed. The end was perforated. She had to have a colectomy. She was devastated. Here she is only 25 and looking at the prospect of an ostomy the rest of her life. Her self-esteem took a major hit. We survived the surgery and began learning to live with this new issue.

Just as we all were adjusting to this she began having upper abdomen pain. Now she is scheduled for an endoscopy as they try to figure out what is wrong now. I fear that it may be reoccurring gin her small intestine or maybe she has developed stomach ulcers. I have tried to find information about both of these scenarios in connection with her ileostomy, but have come up empty handed. I try to talk to close friends & family about my fears, but they just don't understand.

Sorry if this has been too long, but I just needed to get it out. Thank you to anyone who reads this.
01-01-2014, 10:19 AM   #17
everlandfarm
 
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Thank you for that information. Our son is 27 and he is doing his own research and involved in online support. He is making his own decisions on his journey with Crohn's. That is part of our need for support is that in some ways we have learned we have little power in this situation. We can set limits on what we can do or don't want to do in terms of caretaking our son. We can and do tell him how we feel about his illness, how it affects us and the family. But, we tried for a long time to try to tell him what to do and it only alienated us from him. Anyone else out there struggling with these types of dilemmas?
It's difficult to walk the line between helping "a child" with Crohn's and aggravating the situation. My son, age 35, has struggled with adult-onset Crohn's for 10+ yrs. I can't remember a time in his adult life when he's been much more than bitter and angry. As parents of ADULT sons and daughters, the best help we can offer is to remember that they're so uncomfortable most of the time that it does no good to ask, "How are you feeling today?" The answer is usually, "lousy," and our best intentions only serve to remind them of how bad it is. We've all experienced a bout with diarrhea... wondering when it will end... being unable to simply sit down and find a comfortable position...hoping to make it to the bathroom again in time - usually within minutes of when you just found a comfortable way to actually sit down. As parents, we must strive to remember that any alienation or anger that comes our way is not intentional and we shouldn't take it personally.
01-03-2014, 09:14 AM   #18
Tesscorm
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Veronica A - I'm so sorry to hear of all your daughter (and your family) have been through. My son was fairly quickly diagnosed and put on treatment but so many here have had to wait months, years somtimes, to finally reach the point of treatment. It absolutely amazes me and I just can't understand it.

My son hasn't had surgery so I'm not fully aware of outcomes but is it possible that your daughter's surgery can eventually be reversed? How is she dealing with it, I can only imagine it must be very difficult for a girl of her age. I know that I've read of success stories of members who have had surgery; if your daughter's surgery is not reversible, I do hope it brings her relief and the ability to get on with her life painfree and successfully. There are also subforum for surgery and stomas - you may find additional information there. Here is a link:

http://www.crohnsforum.com/forumdisplay.php?f=71

Is she on maintenance medication now? As far as the endoscopy and inflammation in her small intestine... please be aware that an endoscopy is not able to reach far into the small intestine, usually just beyond the terminal ileum. Is she also scheduled to have imaging testing, such as an MRE or CT scan? If the endoscopy does not show anything, these imaging tests may help identify what is causing the pain. When is she having the endoscopy? I hope it provides you with some answers!

Everlandfarm - I completely agree with you re the fine line between offering support and becoming a 'bother'. My son is much younger than yours, 19, but I have also learned to not always ask 'how are you?'. I also began to feel that my questions, suggestions, etc. were, at times, simply a reminder and forced him to think/talk about something that he was trying not to think/talk about. But, as a parent, it's definitely not easy to see your child, regardless of age, suffer and not be able to alleviate that suffering.
02-06-2014, 06:53 PM   #19
Olliesmum
 
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Hi all,
Sorry I'm new to all this but need some help please, been living a nightmare since Dec!
My son Ollie is 16 and has Crohns diagnosed Feb 2013 but been unwell since he was 5! Lots of scopes and finally a diagnosis. Ollie had a colonoscopy at the end of Nov and began to feel dizzy a few days later. I called the consultants secretary who assured me she would tell the consultant. Another week later, no call back and Ollie collapsed with abdo pain. We ended up on a ward with IV antibiotics and pain meds, 5 days in hospital then Ollie had 1st infusion of Infliximab and we went home. 2weeks later 2nd Infliximab infusion and next day in evening Ollie was in a lot of pain, another 10 days in hospital on iV fentanyl for pain and then constipated and needing movacol. Home again then back 2 days later in severe pain again. This has been going on for weeks now in and out, given opiates for pain then constipation and more pain. The latest now is Ollies stomach swelled up and he was in urinary retention! He was given a catheter which has to stay for 2 weeks, and an enema then we went home.
We are going out of our minds with worry and stress and Ollie is still off school and missing his friends and very miserable. Please can anyone offer advice x
02-07-2014, 07:37 PM   #20
everlandfarm
 
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I hope someone with more experience will be able to help you with sound advice. Unfamiliar with your location, obviously - since I'm in the States - but if I were in your situation, I'd try to find a different gastroenterologist - for a second opinion, which may bring an alternative course of treatment. Your young son is certainly having a terribly difficult time in achieving some control with this devastating disease.
03-31-2014, 07:23 PM   #21
NancyS
 
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I am looking for a gastroenterologist for my son who has recently moved to Chico and has Crohn's. Any recommendations?
06-25-2014, 12:46 AM   #22
Mommeran
 
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I have a 25 year old son, diagnosed with Crohn's almost 3 years ago. Biologics are not improving his inflammation response. He also is on the Autism spectrum, very high functioning but has always struggled with anxiety, depression, and a delay in executive functioning. He cannot take prednisone due to depression issues.
Getting him this far has been a continual struggle for his whole life. He is a Physics, Chemistry major in college, his has excellent potential if he can overcome his physical and mental issues. We have done everything possible to support him to help him overcome his challenges. Now Crohn's. He is so frustrated still living at home and having his life arrested by Crohn's. Yes, trying to remember that his life is his path and not ours is a constant source of challenge. I've learned to find joy in the darkest moments. I'm practicing wishing him happiness once every hour. We are in constant strife. We practice acceptance, letting go, compassion, and beginning again. Every day is a new learning experience. It's hard, beautiful and all we can do is to fall forward and keep on trying.
08-05-2014, 11:56 AM   #23
nervous mom
 
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Hi to all of the other parents on this forum. So glad I found this. I have 25 year old son, diagnosed at age 10, so 15 years of this so far. He has perianal crohns colitis, e.g. his inflammation is in lower colon, rectum. Has had history of fistula and a stricure near anal opening. Has been on all meds, biologics basically almost from the start. So, 6 years of remicade, then just 6mp, then humira. year 6 of humira.

Thank god, he responds to the biologics, and his last 2 scopes were good. He is very very thin, and always constipated from the rectal stricture, so he probably does not feel like eating all that much. He has been to Cleveland Clinic, now living on his own in ny and seeing doc at big ibd clinic there. He is moving to LOs Angeles in a few months and I am a wreck! Have found IBD clinic at Cedars Sinai for him. The issue is that he is so deathly afraid of the humira injections that we pay a private nurse to inject him at his apartment. He is non compliant, and skips alot, and even stopped for 6 months until we figured things out. It seems if he gets a "good report" and is asymptomatic, he skips meds. Now that he is moving far away I am so worried he will not take shots. I guess I am just venting. I keep telling him he is lucky the meds work, and he needs to be proactive to keep himself healthy. It is so hard we butt heads all the time, and I don't want to alienate him. Do I just hope for the best and hope he does not crash? He had a bad flare 6 years ago, and almost had to have a permament ostomy. Thank god, doc said things were not as bad as he thought, and was able to keep him on meds. I keep reminding my son of that awful summer, but he has selective memory. Thanks to all for listening.
08-05-2014, 12:08 PM   #24
Clash
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Welcome to the forum. I understand your concern, my son is almost 18 and we have had our battles with some meds. Never his biologic because it was remicade so really no choice. But now he is on only mtx injections. He has been compliant so far but getting him to take the folic acid with it is another story! He injects himself with mtx every Thursday but will skip a painless little pill everyday if not reminded.

I've decided since he will soon be out of the house that he has to make the choices and decisions and then deal with the consequences. I do remind him that it is his disease and I won't always be making the decisions.

I know it must be hard to let go and I'm not sure I will handle it when he is in full control but I hope that I can let him live and learn from his own mistakes.

Can you find a private nurse willing to do the shots out there? Or possibly give him the name of a couple of support groups that can help support him in his treatment options?
__________________
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
08-05-2014, 12:17 PM   #25
nervous mom
 
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Wow, that was quick! I am so grateful someone actually responded so quickly. You would think that after 15 years I would be more relaxed, but because of this huge move, I am totally anxious. Anyway, I already scoped out the nursing situation. I have options lined up for him, so hopefully he will comply. He can either have nurse come to him, or even go to an infusion center for shots. I actually found a place 2 miles from his office, and they will have meds there! (sort of like an allergist, they keep meds). He plans on living with a friend, so I am worried because I know he tells no one he has crohns, and therefore would not want a nurse coming over. I even said he could get a small dorm fridge to keep the meds in the privacy of his bedroom.

He is still somewhat in denial about this entire thing. My husband is a doc, and for years injected him. It took hours to even get the needle in him. We are all needle phobic in this family, so I don't blame him, and the Humira is very painful, not an ordinary injection. Then we got him valium so that helped.

So, yes, there is a place for him to get it once he moves. Question is, will he actually go! And unless he agrees to sign a hippa form, they never let the parents know anything. I think you are right, I have to try to let it go. Of course, he is only hurting himself, and of course if he gets sick I will be the one flying out there to pick up the pieces. My husband does not fly!!! We have no family or anyone out there, but he has a good job, got a huge promotion and wants to go. I can't let the Crohns win, by begging him to stay in NY. So, Hopefully is it temporary (he says he will come back after 2 years), and he stays well. Thanks for your words of encouragement.
08-05-2014, 12:41 PM   #26
Clash
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Are you using the injection pens or syringes? I know the shots are painful and that he has a fear of needles but supposedly the syringes aren't as painful. Also, another Mom on here, my little penguin, has a young son on humira. She uses the syringes and has lidocaine added to the shots in order to stave off some of the pain. Since I tagged her she may be along shortly with more info on that.

My son is fairly open about his disease but I think that is partly due to his age but it may change when he heads to college.

Compliancy can be such an issue when they hit young adulthood so I can imagine the battle you have faced in getting him to recognize and take control of his illness. I think all kids at the early adulthood age have selective memory and a sense of invincibility. It is true that we will also suffer if they don't take control of their health as it will inevitably be us picking up the pieces. I remind my son though that his choices can lead to results that can affect our whole family emotionally, financially and physically(in not a spring chicken anymore! Ha) But the truth is this disease can be insidious and he can make all great choices and still have results that require our emotional, financial and physical support. CD is such a no win at times!

Maybe, since he is secretive about his illness something like this forum could provide him with support and insight into his illness. There are a number of members on this forum around his age that have been dealing with this illness since childhood. Just a thought!

Anyway, I wish you the best and hope your son finds success in health and career.
10-31-2014, 10:34 AM   #27
maxx445
 
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My son isn't in remission yet he's still in a lot of pain and discomfort. He has started with a new closer GI but can't seem to get treated when he has a flareup because Holy Cross and Adventist hospitals have convinced themselves he is a junkie looking for pain medications! He is in a flare up now and they don't seem to want to treat him.
05-05-2015, 12:31 PM   #28
CD mom
 
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Our son is 27 and has Crohn's Disease for over 3 years now. He had to drop out of a Ph.D. program that he had just begun. He has had to move in with us and has spent most of 3 years in his old bedroom in the dark because the light makes him nauseated. He is in pain and takes pain medicine, but, nothing helps the nausea. He is unable to have a life outside of us , the internet, and the telephone. We have a two story house and he rarely comes downstairs as now his joints have begun hurting him. No matter what medicine the doctors give him, he continues to be in pain and suffer nausea. He has seen a number of G.I.'s who say they see no active inflammation, so they don't know what to do for him. Needless to say this is very painful for us as well as for our son. He had such a bright future and has really gotten shot down on take off. We are worried about his future. We are close to retirement age and are concerned what he will do when we can no longer care for him. We don't know anyone in our situation and are eager for support.
I share the boat you are in. It is such a fine line. I began this journey 17 years ago when my son was 7 years old. I felt such fear and a heavy burden trying to trust the doctors. This disease has no "blueprint" plan. It affects everyone differently. Some meds work for some, and some don't. remissions have been short. Even after small intestinal resection at age 13, he was ill within 2 months. He has been on many drugs (remicade, humira, 6mp, and others without success) and is seen periodically at Mayo. Mayo was truly a God send. They had many clinical trials and options that his doctors in St. Louis and Kansas City had no access to. His Mayo doctor literally saved him from another resection by giving him medication off label that was being used in a clinical trial. When he went to college he didn't keep up with his meds. More hospitalizations. Finally, now he sees that he MUST take some participation in his illness. He resents me when I try to discuss his options. He is so sick of other people controlling his life! It is frequent for young adults with active and debilitating Crohn's to lose hope. Many develop anxiety, depression and PTSD.
When he was 21 He moved out to California, but was so debilitating ill, he was unable to work or go to college (4th time he has had to drop out due to Crohn's!) and was housebound. He was forced to move in with his sister and her family here in Pennsylvania. He has had to quit 2 jobs in the last year due to his Crohn's Disease. Because Cimzia has not really helped him the doctors in Pennsylvania started him on Entyvio in early December '14 during one of his frequent hospitalizations. His scope in December revealed multiple severe, deep ulcerations in his large bowel, rectal bleeding, on top of known small intestinal stictures. Multiple hospitalizations due to extreme pain, dehydration, malnutrition, severe anemia and extreme fatigue. Finally 18 weeks later he had a scope and ulcerations looked not so scary. He still is on frequent iron infusions and the drs want hime to continue on the cimzia for awhile longer. He remains on prednisone. Seems he can't wean below 20mg without a cascade of worsening symptoms.
He continues to have extreme fatigue, failure to gain weight, anemia, joint pain, diarrhea and abdominal pain. However he has said "things have gotten somewhat better". Low residue diet and a lot of Ensure. 10-15 bowel movements per day and occasional vomiting.
He was also diagnosed with PTSD due to his lifelong battle with Crohn's. Apparently this is not uncommon with refractory Crohn's and adults that were diagnosed as children.


I'm from STL. Just wondering where your son has been evaluated/treated.

Also, you mentioned he is light sensitive. Iritis is a common eye condition in Crohn's patients. I have it frequently myself and experience, pain, light sensitivity, and nausea. Also migraines. It is advised that Crohn's patients see an OPTHALMOLOGIST yearly. Steroid eye drops and pain drops help.

Also, more times than I can count my son's bloodwork was "normal" only to find lesions, strictures and fistulas when scoped.
What is his diet like?
Would he be willing to see another doctor (I realize he has seen many already)?
I'm glad you are here. We can help and support each other. I have been dealing with this for so long. It seems that Crohn's has begun to define who my son is. Sigh…

Present meds:
Cimzia
Entyvio
Iron infusions
Prednisone
pain meds

DX @ 7 yrs old in 1999.

Past meds:
6mp
sulfasalazine,
mesalamine,
olsalazine
cipro
flagyl
leukine
budesonide
Remicade
Humira
Methotrexate
PICC line for total parenteral nutrition when he was totally unable to eat
probiotics

Last edited by CD mom; 05-05-2015 at 01:41 PM.
07-08-2015, 04:45 PM   #29
theresad
 
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Location: Chicago, Illinois

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I just found this thread and it really gutted me. UGH, this disease has so many facets to it. I can relate to the struggles of anyone trying to help and often manage an adult child. My son was dx'd at 17 and is now 21. I have grieved, like you all have, for the losses he's had in his short life so far, missing social stuff, missing school, practically taking up residence at the doctors office/hospital, and feeling like death warmed over and deeply in pain in what should be the prime of his life.

The first thing I will say is that this disease is a full on loss. It is a death to the life we thought our kids would have. It is a death to our expectations for them. It's death to what we thought would be the future. We lived our lives protecting our kids so they could grow up and be independent and be happy and thrive. This disease throws that off course. It deserves to be grieved. I think we should make sure to acknowledge this as parents, and take care of ourselves mentally in this regard. This support forum has been a godsend for me, even if it's just to read experiences, let out the pain, and have someone else to relate to. I also think that when our kids are in their darkest days, that we need to be fueled up to be strong and help them fight. We can't forget to take care of ourselves mentally and physically.

The second thing I will say is that dealing with a chronic illness seems like it's often harder on the caregiver than it is on the patient. We feel guilty. We feel sorry. We want to help, yet are helpless. We want to fix, but are powerless. And the patient is in pain, is often depressed, and the caregiver is often the object of hostility. In part because they trust that we are not going anywhere - they can take it out on us because they trust us, and they have to get out their anger and depression somewhere. Some really smart person, I can't remember who, said that over in another forum and it's the truth. The dynamic is difficult, but knowing that you bear the brunt because you are strong enough to bear the brunt provides a little comfort, however twisted.

The third thing I've noticed is the way that this journey with Crohns kind of parallels life. I am still trying to balance staying involved peripherally but also giving my kid the reins to start to make decisions and manage his own life. I remember the first time the doctors office wouldn't give me test results because my son didn't sign the HIPAA forms. I almost LOST IT.

Crohns is teaching me how to do what every parent really needs to do and it is so tough to do, let alone do well in these situations where life can be quite literally on the line. I think that with healthy kids, all parents go through the same thing. We are just going through the "raw" version. We need to let our kids sort it out, while making sure we guide them in the right direction, be there for them, and get them the help they need.

This journey has helped me have a very open relationship with my son. I am not sure I'd have the relationship we have if he didn't have Crohns and for that I am thankful. I have hope that he will get relief. I have hope that he will find a way to live his life in as full a way as he's capable. He will have severe limitations, but I have to hope that he will make his way as alot of other young adults have demonstrated is possible on this forum. A visit over to the teen forum for a skim makes me hopeful and happy to see such strength coming from these kids. They are strong. They will overcome. We have to trust that.

That is not to say that things will be perfect. Like others here, my son has not been doing well over the past year. He tried college full time last year and he just couldn't handle it. His last colonoscopy was a train wreck and he just started Remicade this week. Devastating and scary decision. He is often surly and grumpy and depressed and sullen.

So I am learning to communicate better. To adapt more. To be patient. To modify my expectations on how he spends his time, where he works, and how he goes to school. And find a "new normal" and let go of old expectations. I think that's the hard part.

On roles and responsibilities, I do schedule/go with him to his specialist appointments still, but manages all his day to day generic appointments and blood test stuff. I manage the insurance paperwork, but I do that for entire household, so it is what it is. I also do the grocery shopping, test out new recipes, etc. On letting go, I am probably still too involved, but I am working through the process and we will gradually pass it over. I harassed him to get a part time job until he got one, and also chat with him actively about new plans for school and how we're going to figure out a part time/online solution to push forward there. In this regard, I don't think there's anything wrong with pushing them to have school/job, however modified those plans have to be to fit their circumstances, I think it's good for everyone.

One thing I simply insisted on is that he start seeing a counselor. That is one thing I didn't let up on until he made the first appt. I researched, I sent links, I texted, I talked, I threatened to BE his therapist... I pretty much harassed the crap out of him until he bit the line, because I felt so strongly that mental health is 90% of the game here.

I'm always worried (sometimes terrified) about the future - will he finish school, will he be able to get and sustain a full time job, will this treatment work, what happens if it doesn't, will he need surgery, what happens if he catches a virus, what happens if he never feels better, what if he gets cancer, what happens when he's too old to be on our insurance, etc. etc. But those worries are unproductive. All we have is today. I know that sounds new age, but if this disease has taught me anything, that's it. Do the best you can do today and don't worry about tomorrow until it happens.

Anyway, long rant My heart goes out to all the parents on this thread. I hope that you find balance and peace on your journey. I am here to listen if anyone needs an ear.
__________________
Mom of son with Crohn's Disease
DX'd 2011 @ age 17

Current Meds:
Remicade (2015)
Imuran 100mg (2012)

Previous Meds:
Endocort
Lo Dose Naltrexone

Current Supplements:
EPA/DHA
AKBA
Iron
Vitamin D
ALIVE multi
Metamucil
Probiotics
07-23-2015, 09:53 AM   #30
Tesscorm
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Join Date: Jun 2011
Location: Ontario

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theresad - I've just seen your post and what an amazing one!! You've truly captured all my thoughts, worries, fears, expectations, etc., etc. From all the other parents I've met here, we all struggle with the issues; heartbreak when seeing them struggle, fear for the future and searching for the right balance in letting them become more independent as they move into adulthood. The latter is especially hard when their health is on the line! And, you're absolutely right in that the one positive that has come from this is that my son and I have a very close and open relationship, partly due from working through crohns-related struggles.

You are an amazing mom and he is very lucky to have you!!

This support group isn't used/updated very often... which is unfortunate because at every stage and age, there are different issues and we parents can always use a bit support and guidance too! I'm going to tag a few of the parents of older kids, just to remind everyone of the thread.

Dusty, Clash, xmdmom, maya, Catherine ... I know I'm missing a few but... old age!
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