Catching Our Rainbow

Hoping for a rainbow after the storm…

People suck. And so does Crohn’s.

on March 15, 2013

I think people are misunderstanding me when I say hubby is getting better. When I say hubby is doing better, I mean he is only having pain three days out the the week instead of every day. I mean that his pain is tolerable and not causing him to walk hunched over or constantly wince in pain. Yes, he is better, but only when you compare his pain to how he felt before Hu.mira. I think people have this idea in their heads that he will go to the doctor and start on this magical medication and never have any more pain or problems, and as much as I wish that were true, it isn’t. Crohn’s is a lifelong disease that is painful, exhausting, and discouraging, and we were reminded of that this week.

Wednesday evening, hubby was having some abdominal pain. Nothing too bad or out of the ordinary, but it was bad enough that he decided to sleep on the couch so he could be propped up in a comfortable position and he wouldn’t keep me up by tossing and turning in our bed. This is not unusual. He usually sleeps on the couch about two times a week due to pain, but we consider it a big improvement from having pain every day. About 2:40 he came into our room in extreme pain and said that he needed to go the the ER because he couldn’t handle it anymore. Let me just stop and say that my husband is a tough guy with a fairly high pain tolerance who has never gone to the ER because of his Crohn’s pain, so when he said that he was in the worst pain he has ever been in, I took that very seriously. The doctor at the ER ordered some blood tests, and they gave hubby some good pain medication (can I just give a shout out to modern medicine and dilau.did?) while I sat and told hubby how much I love him and to stop worrying about how we are going to pay for the ER trip (we’ve almost met our out-of-pocket for the year because of all of hubby’s tests). Thankfully, all of his tests came back normal, which means he isn’t bleeding internally, he doesn’t have an infection, and he doesn’t have an abscess. The doctor said that he was just having “acute flare up pain,” and gave him a prescription for some pain killers and a steroid pack. We left the ER around 7:30, and I had to call one of hubby’s fire buddies to help me get him in the house because of the pain killers (they gave him some good stuff). That afternoon we called his GI doctor and let them know what had happened, and they said to go ahead and take the steroids.

This is our life. This is what Crohn’s looks like. Yesterday, one of our good friends who also has Crohn’s had to have surgery despite the fact that she was fine when we saw her a week ago. The truth is, even when you are doing better, you can have a night like we had Wednesday, with the worst pain you have ever felt in your life.

Why am I telling you this? I know that we complain a lot about the stupid things people say to infertiles, and I posted a little about some of the things people say to someone who has Crohn’s, but some of the things people have said lately INFURIATE me. It usually begins with someone hubby hasn’t seen in awhile commenting on the weight he has lost and how great he looks. That’s fine. By all means, please boost my husband’s self esteem by telling him how great he looks. Then we usually tell this person that hubby has Crohn’s disease and that he lost 50 pounds in 3-4 months because he was in too much pain to eat. How would you reply to this? Because the most common response is, “Well, at least you look great.” One girl actually had the nerve to say that his diagnosis must have been a huge blessing in disguise because he was able to lose so much weight.

Seriously?

What kind of screwed up culture do we live in? Since when is an extremely painful and life-long intestinal disease preferable to being overweight? Also, let me just say that my husband is 6’4″ and was 240lbs in November. Now he is 190lbs. So it’s not like he was morbidly obese, and he was in good shape (as in, he could run two miles in full fire gear). I would rather my husband be fat than deal with this disease because he can lose that weight–he can never lose Crohn’s disease. And it sucks.

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16 responses to “People suck. And so does Crohn’s.

  1. Oh, wow, when I read this post, I had a flashback to when I was about 20 years old. I’m 5’6″ and have always been a dense person, even when I wasn’t overweight like I am now. I went through a phase with my arthritis where I was in too much pain to eat… I lost so much weight and dropped to a size 2 or 4 (tiny for me). I could see my hip bones through my clothes. Everyone always said “you look GREAT” and I would get so mad because I knew that my “great” look came from being unable to eat more than a small bowl of cereal some days and that I felt so bad.

    It really is awful. I’m glad the Hum.ira is helping some, and I hate to hear that you had to make that trip to the ER. Hopefully, with more time, the med will help even more.

    • That just reflects the culture that we live in where skinny=beautiful and skinny=healthy, when that isn’t necessarily true. I’m so sorry you’ve had to deal with these stupid people as well.

      I’m hoping that the Hum.ira will keep helping him feel better. From the people I’ve asked and the forum’s I’ve read, it usually takes about three months for you to go into remission when you are taking it, so I’m very hopeful.

  2. hopingonhope says:

    Really? What sort of idiot would say that he is at least losing weight. The least people can say is Feel better soon. If I were in your place, I would have snapped and said “Do you want me to wish that for you?”. I say you are a very strong lady, its not easy seeing someone whom we love in such pain.

    • I try to reiterate to these people that he is losing weight because he is sick and in pain, but they just don’t get it. Or maybe they do get it and don’t know what to say so they say something stupid. I always try to keep my cool, but at some point I’m going to snap and point out just how stupid they are being.
      Thank you, sometimes I don’t feel strong. I mostly just feel helpless.

  3. Arwen Rose says:

    Oh my god I can’t believe someone would say that!! I am so sorry. That is what they should say. Thinking of you both.

  4. ewagner123 says:

    Oh hell. People do say the dumbest things. Try not to dwell on the negative and focus on the positive people in your life. People just don’t get it. At all. Obviously. I am SO sorry your dear husband is going through this. So terrible. Honestly, I know next to nothing about Crohn’s. Nothing. I hope that someday he can at least manage it and feel better… I do know someone on BBC who has it and it is now in remission. So I hope that is possible for your DH. Big hugs!

  5. April says:

    Ugh. People. They always know what’s best for everyone else, don’t they? I’m very glad he’s improving so much, and hope this is a trend that continues. And no more need for ER visits, for any reason!

  6. steph50 says:

    Unfortunately, some people haven’t grasped the concept that when you don’t have anything smart to say, you shouldn’t say anything at all… I’m sorry you both have to deal with that on top of the mean disease that is Crohn’s. I’m thinking about you both xox

  7. vinniecabido says:

    I’m sorry some people’s idiotic behaviors.I also have Cronh’s and people can really say the stupidest things. Hang in there!

  8. Kristin says:

    People are so stupid sometimes. I’m sorry your husband had such an awful flare-up. I know a couple of people with Crohn’s Disease, and I know how disruptive it can be to daily life. Continued thoughts and prayers for health.

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