Newly diagnosed significant other.

Hi all,

I've been doing a lot of reading on these forums since my boyfriend first mentioned to me that there was a possibility he had Crohn's several months ago. He suffered from extreme stomach pain about two years ago (before we started seeing one another) and while at the ER it was suggested that Crohn's might be the problem but no tests or follow ups were ordered because he has no insurance.

About a week ago he suffered debilitating pain after eating that refused to go away. Eventually we decided it was best that he see a doctor, and after a frustrating four days at the hospital (for which he was completely NPO) they finally got him in for a scope. When the doctor came back out he said that though he couldn't completely rule out a bacterial infection it looked like Crohn's of the illeum.

I'd been doing a lot of research in the months beforehand, just in case Crohn's even ended up being the diagnosis but I don't think anything prepared me for hearing the actual words. He's been in pain on and off and it kills me knowing that there is very little I can actually do except try my best to be supportive and understand that when he snaps or yells it isn't really at me, it's at this horrible pain.

I guess I just wanted to reach out to other people who understood and who might give me advice or suggestions. Is there anything that you can do for terrible pain? I know that NSAIDS and so on are out, but is Tylenol really that effective? Is there anything herbal he could take? He's currently on 40 mg of Prednisone and set to taper off (I'm hoping it stays that way) and he's due to see his GI in a week and a half to get started on a more specific medication regimen.

Honestly, any advice at all, or any success stories would be comforting to hear right now. I just feel so helpless and I know he feels the same. To be honest, he's probably handling this better than I am. He's always been really strong.

Thank you for this forum. The books I've read on Crohn's can be frightening and this forum helped me feel like this is something that can be dealt with, even though it will be hard.

Hi, welcome to the forum, and thank you for being such a caring and concerned partner! It's so nice that you want to help him (sometimes significant others aren't the most understanding so bravo to you!), and I'm sure it is very worrying to see your boyfriend like this. There isn't a whole lot you can do for his pain. You're right, Tylenol doesn't do much, NSAIDs are out, and prescription pain meds will carry risk of addicition/dependency so they should be used sparingly. I have heard others on the forum mention Tramadol as being a pretty good but not too strong prescription pain med, so your boyfriend might want to ask about that one. Otherwise, things like a hot bath or a heating pad can help somewhat too, especially with crampy-type pains.

As for what else you can do to help him out, my thought is that just helping with stuff around the house would probably be a big help to him. I know that when I'm flaring, even small chores seem like huge, almost insurmountable tasks. Once during a flare, I decided to try to do some laundry. I was too weak to carry it up or down the stairs myself though so my husband had to. I tried folding and putting away the laundry by myself, but I was so weak and light-headed that I needed to take frequent breaks and it took probably over an hour just to fold & put away one load. So, little stuff like that would probably help him greatly. Everything is much more challenging in a flare, even little stuff.

And if you'd like to hear a success story - after awhile of struggling and being very ill, and even though I don't have a firm diagnosis yet, I am in remission and have been in remission for about a year now. I've got my life back and most of the time I feel great - I work full-time, I exercise regularly, I can travel, etc. Things aren't perfect (I still get some symptoms if I eat the wrong thing, get too stressed, don't get enough sleep, don't exercise enough, forget to take my meds or supplements, etc) but things are so much better than they were and I feel pretty normal again for the most part. Things can get better for your boyfriend. Finding the right mix of meds should help a lot, that was the first step for me getting into remission. Good luck to you and him! I'm sure he'll do great with you fighting in his corner.

Thank you so much for taking the time to reply. It's so nice to know that there's a place out there on the internet with such nice people who are so willing to offer support and advice. Everything seems so overwhelming right now, and a little light at the end of the tunnel is a small but needed relief for both he and I.

The tylenol seemed to help today when he had to work even though he was in pain. And I'm hoping he won't need anything too severe long term, but I will definitely bring up Tramadol with his GI. Even if it's just as an option for the future. It's just hard to watch him suffer.

I'm so glad to hear that you're doing well and I hope you stay healthy and happy! It's nice to know that there's something positive to look forward to! I'm hoping that he'll react well to meds, but I know we're in for a long road ahead. Thank you again, so very very much, for replying and being so kind. These are words I think we both needed to hear.

Ditto on the Tramadol. Codeine can also be useful, it makes me feel a bit less spacey than Tramadol does. (if he gets codeine, always take it with tylenol as it increases the effectiveness )

But hopefully once he is on a specific medication he won't need too many painkillers. Once I started prednisolone, I went from needing double doses of morphine every night in hospital to the very occasional dose of codeine- so occasional I still have some of the 28 pack they gave me- back in April 2010!

I had horrible stomach pains when I was first diagnosed, and hyoscamine and promethazine helped me a lot! They aren't regular pain meds, but antispasmodics. I found if I addressed the cramping, the pain lessoned. Also, I have to echo how much a heating pad helped for that sharp stabbing pains in my guts.

I know it can be really traumatic when you or someone you love is first diagnosed. The information is really scary, but there are a LOT of treatment options out there. I know when I was first diagnosed I just kept hearing "bowel resection" and "colostomy bag" over and over, like it was a foregone conclusion that I'd end up with one of those. Three years into it, I realize now that is not the case. Crohn's is definitely manageable!