Marriage and Crohns

My husband is having MUCH trouble understanding why I don't want to continue to go out with all of our friends. I am sick and have lost about 17 pounds in the last month. I have aches and pains that can't even be explained. I still "look good" or atleast that's the going comment from everyone. And, I am sure that is why he thinks I should just keep going out. This is the second time in the last 5 years that I have been really sick. He was awful the last time too. I was pretty sick for about 3.5 months and I think he decided to be nice after about month 2. When I go to the bathroom it is pure water. I am trying some different things before I go back to my GI and he will prescribe some awful poisonous medicine. I can't seem to get any comfort, sympathy, empathy or just kindness from him. Everything is a fight because we are constantly being invited places that I don't feel like going. Not to mention the ordeal with going to the bathroom at the spur of the moment! I mean seriously, how can someone who lives with me 7 days a week not realize that I am sick! We have been together for more than 16 years so it isn't like he just figured out I was sick. I am on here ranting but any advice would be helpful right now.

Staci, it totally sucks to feel so sick and I'm sorry that your DH is not understanding. But please don't wait to go to the GI. You're not going to get better w/o meds, sorry.

I'm not one to complain much and mostly it's my DH telling me to slow down and to call my GI. We all have our challenges, LOL!

I have to say that I too agree with Kazbern. This is a chronic and incurable bowel disease and must be treated at all times. I am sorry you husband is not being supportive, but maybe he thinks things aren't as bad because you aren't going to the doctor. I would make an appt asap, and TAKE your husband with you. Maybe the doc can help him to understand what living with Crohns is like. Sending healing prayers your way. Hugs!

staci, I hear ya. Men can be pretty nonunderstanding sometimes, but I think it's partly because they are proned to want to "fix" it. He could partly be in denial that his wife is a little "broken" right now.

Try to get through it, be as nice to him as possible, but do what you need to do to feel better.

BTW, are you still on LDN? How do you find the side effects?

Sometimes I think loved ones can also be in a state of denial and don't want to recognize they have to deal with this too. It is so hard for healthy people to understand what we go through. Heck, sometimes the doctors don't understand! But, I hope by having your husband go to the doctor with you will help. They really need a support group for families too. If you have a spouse who is selfish and self centered, it won't be a picnic. Hopefully, he will come around soon.

Here is why people thought you were off your meds  "I am trying some different things before I go back to my GI and he will prescribe some awful poisonous medicine."

Staci,
It is so hard to sort out all the relationship stuff when it comes to illness and disability. I know because I have been on both ends - my partner has a physical disability and uses a power chair and I am the one usually caring for him, and it is usually his body that causes "interruptions" in plans - right now it is my body. It is weird to be on both sides of it. I know when I am well (which is more often than him) and our plans get cancelled because his disability is preventing it, it is hard for me no matter how understanding I try to be. I love him, and I try my upmost to be supportive, but I also had to realize that every time something happened for him that disrupted both our lives it felt like I had part of his disability too - I had to go through a process of grieving what I felt I was missing because of it, allow myself to feel frustrated, and have an "evolution of dreams". I used to get mad and frustrated when it would happen, but had to learn to accept it (just like he had to learn to accept his disability, and now I am learning to accept my crohn's). I don't know if that helps in the least - we all have such individual paths. I guess what I am trying to say is that I understand your side (a partner's support is so, so important) and also your partner's experience (my guess is that he might be grieving a bit what he feels he is losing - i.e. going out with you - and it is coming out in an unsupportive way). Just a guess, I could be wrong. It might help for both of you to talk about how Crohn's affects both of your lives - because it is not your fault, and it is not his fault, it is this outside blindsiding unpredictable force of Crohn's that just happens and takes some pieces from all of us.
In the meantime, hugs, and best wishes on your path to hopefully a long remission!!
Blueberry.

Sometimes in our own pain and sickness we forget that we are not the only ones living a Crohn's lifestyle. Sure we are ones that are sick all the time and have the physical pain but our loved ones suffer too. We can not expect them to always be completely understanding when we can't do the things we used to and are not willing to try new things out of fear of how our disease may react. All of us in relationships have felt and gone through what you are going through to a degree and it is frustrating but it is also frustrating for our spouses. Because they are not sick they still want to do the fun activities and since you have had a remission with only 2 major flares in the past 5 years, you can't expect him to just know how to react and be patient all the time. If you had been flaring this whole time he would probably be more used to it and adjusted to going by himself or not going. As it goes, he is still adjusting and must love you because he is still around. Don't jump to the conclusion that he does not care but more that he may be going through the process of accepting your disease.
It takes a long time for loved ones to fully comprehend this disease. I pray that you are able to end this flare as quickly as your last one and have another 5 year remission but if not your husband will learn to accept and adjust to your situation. You sound like you have a really great and open line of communication with him, so tell him how you are feeling. Let him know that you would do anything to be able to go out but that you are in a lot of pain. On another note, push yourself to go out once in a while for him and also for YOU. Every single day I wake up and get ready for the day. I go outside and try to do something even if I am sick. If I get out there and I am still too sick then I go back in a lay down. If I do this I atleast know that I gave it a good shot and did not lay victim to my physical pain and sickness. Many times I find that once I am out of the house or out of bed I start feeling a little better and do get something accomplished. I challenge you to do the same thing with your husband. Drive separately from your friend to your activity. Then if you get sick you and your husband can leave without causing the whole group to be affected. Your husband will see that you are giving a great effort and will make him give a better effort into understanding why you are not able to go out all the time like you used to.

I think Sniper has a really good idea. I kinda did that with my husband when he had the stomach flu really bad. I said to him, imagine feeling like that some part of every single day, thats how I feel. It did help him to understand more. Hope you can get this worked out. Hugs!

Ditto on Sniper. Happened to my mother. She is on medicine now that gives her the D on the run. She says she never really understood until she started taking that medicine.

There are quite a few people here who are on or tried LDN. I've talked about it with a crohn's research doctor but he said he wasn't sure if it would be good for me because I also have other health problems. I had a mild cardiomyopathy while pregnant (Thank God it got better!), but I still have tachycardia.
I wonder if LDN is okay for heart issues?

Garythepilot,

Thank you!  I hate all that you have had to go thru as well!  The life is definitely sucked right out of me at this time!!!  Think my husband needs to read your comment!!!

Hi Staci100, Sorry to hear about your problems with crohns. I know to well what your going thru. I've had it for 32 years. All you can do with your husband is talk to him or go to a counselor together. You can't let the stress get to you it only makes crohn's worse. He married you for sickness and in health its time he walks the walk. He already talked the talk. If it was reversed I'm sure you would be there for him, without a thought. I'm not saying it should be easy for him but if he is your friend and lover he should do what ever he can to make things a little easier for you. He needs to know he can be mad at the disease, but not you. I wish you the best life can bring to you good luck.