My boyfriend has had Crohns for 27 years, what can I do to support him?

[missyadvocates]

:sign0085: I'm new to this forum and at my wits end whenever he has flareups. He generally takes care of himself, but I worry so much about him that I find myself racking my brains for any kind of drug out there that might ease his pain. He was on Humira for a time but it didn't seem to help so his GI doc switched him to monthly infusions of Remicade (with Benadryl). On his first infusion, he suffered a severe adverse reaction (chills, tremors). It was so bad, they had to stop the infusion about 15 mins in. I don't have the list of his meds off the top of my head. He also suffers from depression and anxiety, making him irritable at times, especially during flareups.

I don't know what to do despite being a healthcare professional because I have never personally come across anyone with Crohns despite studying it at university. It's different once you have loved ones suffering from this unfair disease. I find myself ill-equipped to handle the stress, yet I am still here and managing. I suffer from depression and anxiety (recently diagnosed) and might also possibly have a slipped disc (a work injury) - confirmation by MRI just a month away. Recently, I have been trying to take better care of myself but it falls by the wayside when my boyfriend has flareups. He doesn't even know I've started looking for a support group. :shifty-t:

 

[Crohns08]

I think the most important thing is to just be there but to have an open line of communication. You need to tell him how you feel but also be able to listen to him and what he needs as well. If he's flaring he really needs to get in to see his GI. Crohn's can snowball really fast to major complications if left untreated. There are also supplements he can take that might help as well like D3, Omega 3's, and L-glutamine. A lot of crohn's patients are malnourished in a lot of areas so making sure he gets on a good vitamin and supplements is important. How is his diet? Has he tried controlling his crohn's with any of them that you know of? Sometimes meds and diet in combination can really help.

 

[worriedboy]

Hi and welcome,

I also suggest that your BF check his vit. D levels... many Crohnies are difficient and this can be a source of depression (as well as other problems such as osteoporosis). If his Crohns is located in the TI then he may not be absorbing vit. B12 well, and that is another possible source neuro issues.

Your BF sounds like a brave man that wouldnt like to be a "berden" on you, thus taking care of his health on his own; if you'd like to take a part of that, do it very gentely. If you can make him less isolated and less lonely it will be a great thing.


Feel better soon (you two(

 

[David]

Welcome to the community. That you're here asking how to support your boyfriend is already amazing. Good for you! He is lucky to have such a wonderful person in his life. Keep reading the thread here. You're going to get a tremendous amount of insight that will no doubt help you help your boyfriend.

I wish you both well.

 

[POTTYTIME!]

Missyadvocates,

First off, your BF is very blessed to have you. My wife and I go through the same problems. It is a man thing to be self reliant. A true MAN does not want someone someone waiting on them hand and foot, and with this disease, you lose your dignity.

I find when im in pain, I let my wife know so that words are not taken out of context. She stays stressed out because she dont know what to do, she cant get close to me, I sleep on the couch "when I sleep". Really the best thing that can be done is just to be there for him. If he is cranky, distant, etc. Just be patient and remember. And your trying to find information for him to help in anyway possible, shows the kind of person you are. Being a person with Crohn's Disease, I can say you are a blessing to him. Hope all gets better.

 

[verrucktfuchs]

POTTYTIME is right, it's a disease where you lose your dignity. It's probably different for everyone but when I have a flare-up, I just want to be left alone. The best thing my girlfriend can do is help me with things I ask for help with (usually it's commitments I've made to things that I have to break, eg. meetings etc), and other than that just leave me to get past it- it sounds terrible, but it's true! You sound like a lovely person to be trying to find out how you can help and I hope you find some answers here.

 

[Honey]

Hi there and welcome,
You sound very understanding so I do not need to tell you the most important thing is to listen to how he feels, and empathize. The most annoying thing, I often, met with was being dismissed with how well I looked! Also, those who said they new someone else with Crohns and there was nothing wrong with them - they were fine!!!!!! We are all individuals in any illness, what meds work for one may not be suitable for another. I was on Remicade infusions every 8 weeks, until I reacted and was in hospital with a lung infection.
I am currently doing well just on a small doze of steroids for another problem. Sometimes, the dealing with the side effects of meds is worse than the illness. So I understand your story. Your emotions are all over the place, so being down or tearful is a natural reaction to living with a difficult illness.
One other bit of advice: trying to live a normal live and following one's hobbies is important for well being. For me, that is being creative and painting pictures, also I am a keen photographer. I hope I have helped and have not gone on too long! Let me know how you are doing.
:rosette1::welcome::rosette1: