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My Boyfriend Has Crohn's

Hello, sorry if this is in the wrong section, I've just signed up.
I don't know if I am looking for answers but I am not sure what to.

Personally, I do not have Crohn's disease but my boyfriend does.
We haven't been seeing each other long and he told me about it before we became an official couple and has been very open about it.

He takes different medicines for it, I think there is three he takes that are Crohn's related, ones steroids, another prevents damage to his liver that the steroids cause and I can't remember the third. He has a weak immune system (I don't know if it's related to his Crohn's) and he gets ill a lot as a result. Also his medicine makes him ill too and he feels tired a lot of the time.

He said that he spent a lot of his childhood in hospital because of Crohn's and around the age of 11 had either 6 or 12 inches of his large intestine removed (he said he can't remember how much he just knows it was one or the other.) he had to have the same operation at the beginning of 2011 with the same amount of large intestine being removed.

He also informed me that at 18 when things with how ill he was began getting really bad, he turned to drink, he'd constantly be going out drinking and around this time doctors said he wouldn't make it to 36 if things didn't change.
He still does, but rarely, and when he does he doesn't drink a lot. He said he doesn't know whether or not the 36 thing was a way to scare him off alcohol or whether they were being serious that he wouldn't last past 36. If they were right that gives him 10 years.

We haven't been seeing each other long, but he has become very dear to me very quickly, I have no intention on leaving him because of this disease, I have done some research myself to try and make things easier for him, but I don't know what to do exactly.
He's been ill a lot more than usual recently, and complaining that he feels tired all the time (pretty much every time I see him). He's saying I shouldn't worry about him, after all he's been dealing with this illness alone for a long time. A few weeks ago though I heard him say something like "It can't be getting this bad again, It's only been 2 years since the operation." He said he was just exclaiming because he was feeling ill and I shouldn't be bothered but I am getting worried.

I have known this man for a long time, and I love him very much, I want to make things easier for him, I want to be able to support him, but I think I am getting to wrapped up in my own upset over him being ill. Can anyone offer any advice in this? I thought where else better to ask for advice than in a place where people experience the disease first hand. I'm really worried for him.
 

nogutsnoglory

Moderator
Unfortunately surgery is not a cure for Crohn's and it is possible he is flaring and inflamed two years out of surgery. I myself am one year out of surgery and significantly inflamed.

"If the bowel is resected when the disease is active, the recurrence rate (within 3–4 years) approaches 50%."
-http://www.hopkins-gi.org/

Keep in mind everyone is different and it depends on the person and severity of the disease. I hope he will get healthy and it won't impact your relationship.
 
Crohn's is really unpredictable, I had a big surgery and just months after I got sick again and had another surgery a year later. Just be there for him that's all you can really do. Hope everything works out.
 
What a sweet woman you are! Good for you! If I had one piece of advice, it would be to learn everything you can about Crohn's disease. Learn the medications, complications, etc. Then maybe one day you can advocate for your boyfriend. That way he gets good treatment.
 
I have Crohn's and overall am pretty positive, but when I am down the best thing my husband can do is feed me words of encouragement. Sometimes, I find that even hard to hear when I am having a really bad day and then he just holds me and rubs my head. : )

I know it's hard for him to see me feeling bad and so I find myself trying to be strong and not show my feelings sometimes, but he is so very good about letting me know "it's ok to have a breakdown every now and then and that this too shall pass" I think the thing I like hearing the most is that it's ok to feel bad and that he will always be there for me no matter what. I think alot of Crohn's patients fear that their illness will just get old and eventually this love of my life will just burn out on my issues, so again the best thing is obvious support and always phrases like "WE will get through this"

Crohn's is a life changing thing, not just for the diagnosed, but for the people close to them. Knowledge and lots of understating is what he needs.

In addition, my husband insist on going to all my appointments with me. This makes me feel so good since I get so nervous about going to the docs. He always remembers & corrects me on things I just don't absorb. Just yesterday he asked me if I had started my antbx. I said, "no, I was supposed to start them when I started the Humira" and sure enough he was right & I am supposed to start them days before. He is my rock and I don't know how I could get through all this without him.

Sorry so long.... I tend to ramble : )
 
Bloodedflowers, first of all good for you for standing by him and reaching out to find some resources and information! I have had UC for 10 years, and gone through my share of significant others before I found one who could deal. I think a lot of patients are similar in how we want to be treated- NO pity. Don't ever feel sorry for me. Be strong when I am not strong. Let me know that it is OK for me to have IBD, that you like me anyway and realize that there is more to me than that. Recognize that I may feel guilty sometimes. Often I have to cancel plans, I need exceptions that people generally don't understand, I get tired and weak, and I need people to care for me. Especially in a relationship- sometimes I need someone there for me, and I literally feel like I have nothing to give back to this amazing person who has shown me unconditional love. I don't want to feel like a burden on anyone, but yet I do, it's unavoidable. Make me feel strong. I am strong for dealing with this, for going on with my life when I feel like shit. Don't tell me you understand. You don't. Recognize that you don't understand. Ask questions. Ask me how I feel physically. Ask me how I feel emotionally. Make me a priority in other ways besides driving me to the doctor's office. Go out and learn about this disease with me. Cook me gut-friendly meals. Get involved with me, or for me. Go to a walk or a bike ride, fundraise in my honor. Make me laugh at stupid things. Rub my tummy gently. Talk to it, tell it to treat me better :)

Crohn's and colitis are complex diseases- they affect you emotionally as much as physically. Before my boyfriend and I started dating, I remember going out to dinner and he asked me about what it was like to live with colitis in a very straightforward way, almost factual. He never felt sorry for me, and I never felt like he was faking care just because he wanted to be with me. It's a fine line to walk, but I have a very rewarding relationship with the guy who could do this. It sounds like you are motivated to be the best caregiver you can, and that's a huge first step.

Feel free to message me if you want to talk!

Megan
 
Hello everyone, sorry for.the really late reply, stuff with uni kicked off so everything has been hectic for me and my boyfriend :)
He recently went to the hospital and has had his medication upped but another (for his skin) stopped because of damage to his liver (had a test that came back as 400% in relation to alcohol but he has been sober for.months...
Thank you all for the kind advice, I've became almost a crohns encyclopedia! I'm also like a walking calender, need to remind him to take his medication every week because he keeps forgetting, the spoon!!
It seems to have gotten better for him recently though, not as many attacks. I've taken to joking with him when he complains he hurts (cuddles are given when it's really bad) putting on exaggerated whiney voices which makes him laugh which is nice, it used to be so hard to get even a smile out of him when he was ill, now he'll make jokes and have a laugh. :)
 
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