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Crohn's Disease Forum » Support Forum » My poor dad- please help


03-13-2017, 11:08 PM   #1
JasmineA9733
 
Join Date: Mar 2017
Location: San Diego, California
My poor dad- please help

Hi all this is my first post to the Crohn's Forum. I'm here because of my Dad who just turned 72 years old- who is suffering from Crohn's disease. I see him suffer and it kills me. He is my best friend and I don't want to ever lose him. Im scared this disease can take him away. Not only does he have constant pain but he claims to be feeling "out of it", he can't focus or make decisions like he used to. Is this part of the disease? He is going for infusions of Humira and they seem to have been helping ( thats what the doctor says). What can I expect from this? I'm so worried, I can't sleep and I cry daily. I'm an only child ( 27 yr old female) and my dad and me have a very special bond. He recently had a colonoscopy and ever since his lower area has been bothering him- he feels like he has to go to the bathroom and he will rush and nothing happens. Please can someone shed some light for me...I'm so lost.....
03-13-2017, 11:26 PM   #2
Trysha
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Hello Jasmine
Welcome to the forum
It would be best if your Dad was to let the doctors know what is happening.
Perhaps the Humira is not at an optimal level for him or maybe he needs a different drug...
If the docs know of all his ongoing symptoms they may be able to help.it is very hard to watch our loved ones suffering and crohns can be difficult at times to bring under some control.
Perhaps he could use some dietary help...has he been advised by a dietician..
It is good that he has a very caring daughter...but you must take care of yourself also...and worrying. Just does not help.
Make that appointment for him with the GI
Feel better soon...both of you
Hugs and. best wishes
Trysha
03-13-2017, 11:35 PM   #3
JasmineA9733
 
Join Date: Mar 2017
Location: San Diego, California
Thanks Trisha, he hasn't been to a dietician but I have advised him many times to go. I will work with my mom to try and make him go.
He is going tomorrow for an infusion and I will let the nurses know of his issues. Hopefully this infusion helps him. I forgot to mention his flare up has been for ONE YEAR. This year has been very tough for him- his mother passed away and his business has failed.
Thank You
*hugs*
03-20-2017, 10:18 PM   #4
MizzSarah
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Goodness seems like he has dealt with an incredible amount of stress in the last while. That too can really upset the Crohn's. I have Crohn's but my father has dealt with his own Crohn's battle for nearly 2 decades now. With the amount of various medications to treat the Crohn's--along with other conditions that have presented itself I have noticed he isn't able to focus as well as he should in his early fifties. For much of my childhood my mother was the one who made most decisions as a result of him being unwell. I've grown up witnessing his battle and I can tell you from my experience as well as his---too many medications are never good for the mind.

Talk to a dietician as well as his GP to talk about pain medications. As someone who fought for 7 years unmediated, it was the worse. The Crohn's discomfort as well as the pain is just two unbearable battles. If he needs pain relief then that is something that should be talked about.

*i hated having to ask for pain relief but it greatly helped.
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03-21-2017, 12:45 PM   #5
Lisa
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The best thing you can do is to be an advocate for him - if you are able and willing, take note of symptoms, if he is having issues, etc and make sure the information gets relayed to his doctors. See about being listed as an authorized person with his doctors so that they can discuss his medical information with you.

Also, is he on Humira (shots) or did you mean Remicade (infusion)....

Best of luck with him, and remember we are here for support!!!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
03-21-2017, 09:31 PM   #6
Susan2
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Are you able to, and will your father let you, go to the gastroenterologist with him? It is really important that he tells his medical specialists exactly how he feels and what symptoms he has. As you say, he can't focus like he used to and it needs a really clear head to listen to what he says to the doctors and what they say to him. Unfortunately, Crohn's is a particularly nasty disease and it can take some time to work out the best way to proceed for each individual. Your loving support and strength will be very important to him.
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03-22-2017, 02:10 AM   #7
Dobermonster
 
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Hey Jasmine,
It sounds like he really needs an advocate here, and you're in a good spot if he'll let you. There are many reasons why he could be cognitively affected right now. His doctor should have all labs updated, especially CBC, lytes, TSH, B12, a1c, iron, and hemoglobin. Elderly folks are more at risk of dehydration, infection, electrolyte imbalance, and malnutrition, and also more likely to show increased confusion as a symptom. It's really important to treat these symptoms aggressively (even though many doctors seem to drag their heels or appear unconcerned - be his advocate!). What you can do right now is make sure he is eating and drinking enough, taking any recommended supplements (B12, vit D + calcium are the most common), and keeping diarrhea/loose stools in check as much as possible (contributes to dehydration and loss of electrolytes). If he hasn't seen a dietitian yet, now is the time.
It's hard to be the child of a sick parent, especially dads of an older generation who may be reluctant to see doctors or be open about their symptoms (especially to their kids).
03-22-2017, 08:13 AM   #8
Judy
 
Join Date: May 2013
Location: Newington, Connecticut
Hi all this is my first post to the Crohn's Forum. I'm here because of my Dad who just turned 72 years old- who is suffering from Crohn's disease. I see him suffer and it kills me. He is my best friend and I don't want to ever lose him. Im scared this disease can take him away. Not only does he have constant pain but he claims to be feeling "out of it", he can't focus or make decisions like he used to. Is this part of the disease? He is going for infusions of Humira and they seem to have been helping ( thats what the doctor says). What can I expect from this? I'm so worried, I can't sleep and I cry daily. I'm an only child ( 27 yr old female) and my dad and me have a very special bond. He recently had a colonoscopy and ever since his lower area has been bothering him- he feels like he has to go to the bathroom and he will rush and nothing happens. Please can someone shed some light for me...I'm so lost.....


I am so sorry you are going through this. We often forget that the people close to us suffer when we do. I have a son around your age that has seen me through years of this disease, and I wish he didn't have to. I had surgery to remove diseased sections and have been on Humira for a few years now. It does take time to kick in, and I believe I had to get those bad bits out first. Be sure your dad is hydrating and getting enough nutrition. Talk to a nutritionist if you can that specializes in Crohn's. Electrolytes are important too, not just plain water--so something like Smartwater is better. Avoid sugar when possible too, and I am sure he knows that fiber isn't good when he has a flare. I found white rice and potatoes to be very calming at those times. Just be there for your dad, try not to worry yourself sick too! If his doctor isn't helping him, find another at a major medical institution that specializes. I went to Mt Sinai in NYC. All my best.


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