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Relationship Issues w/Fatigue

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Crohn's Disease
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Posted 7/14/2008 3:02 AM (GMT 0)

 A year ago I fell in love with someone who is 50 years old & was diagnosed with Crohn's 14 years ago.  For him fatigue is a great challenge.  He says he picks up colds & flus from co-workers (me too) and it knocks out his energy level for several weeks at a time(but no cold symptoms).  During these 2-3 week periods he cuts back all social connections to just manage to work normally.

I believe he should see a second gastrologist, continue his hynotism therapy (he quit saying he was too busy), and not put off appointments with his excellent nutritionist. He is taking Azathioprine 187mg/day; Pentasa (mesalamine) 250mg, pro-bacteria, vitamin B injections, protein drinks w/ fish oil.  He works out 3x a week religiously.

 Today he was exhausted again. He feels his energy level has declined the past 3 years. He says his energy level has never been so low as the last few months.

 He feels he knows his Crohns & seeking more help would not do any good -he just has to live in kind of a medatative state with his cats/work until he feels better.  I have to believe that there are more answers than that? (Granted he is already doing a lot) 

Posted 7/14/2008 3:21 AM (GMT 0)
treb, I know you care about him but nothing drives me crazier then someone-usually my family who thinks they know how I should manage my illness. I have to make my own medical decisions.
I want my family to trust I know what I am doing and support the decisions I and my doctor make together.
All of these chronic illnesses rob people of energy. Even well medicated and doing everything right there are times that all of our energy is used up just going through the normal daily activities-sometimes we have to short that.
There is a thread on this forum about the spoon theory-you can do a search for it. Please read it it might give you more of an idea of what he is going through everyday.
Keep in mind that "just another doctor's appointment" wether a hypnotist, nutritionist or GI-is one of the most exhausting painful and draining thing we have to do. Adding one more espescially one we dont think of as neccessary or useful is almost unthinkable.

Of cource that is just my opinion based on my experience. You may get other information frorm others.
Sj
Posted 7/14/2008 4:18 AM (GMT 0)
It sounds like he's following doctors orders at least and is taking his meds plus the working out is a good thing too. Sometimes no matter how much treatment one receives they still have bad flare ups or spells. The only thing you can do is support him and maybe suggest him calling his doc so that things can be adjusted if need be. If he doesn't want to though there's nothing you can really do...nagging won't get you anywhere. Honestly I don't think he needs to see a second doc yet...I could see if his doc wasn't willing to work with him or was neglecting him, but from what you've said he's doing a lot already. Does he miss his nutritionist appts a lot, or just when he's doing bad? Like Sj said any extra appts are very draining...while nutrition is important I think his GI doc appts should come first and as long as he's making those I give him credit. I'm sorry this has been hard on you. You just have to take it one day at a time and hope for the best. If you need to vent or look for support we're here for you. Please, just try to be understanding of your partners condition.
Posted 7/14/2008 5:49 AM (GMT 0)
I know that when I am in a flare, just not feeling right, in pain, whatever, I often tell people I'm just really tired and fatigued. If I don't want to go into detail that is my standard answer to why I can't do something or go somewhere. Maybe 'not having any energy' is just his way of saying he is really sick and not feeling well today. My doc says I am officially without any active disease at the moment, but fatigue is still a huge problem. I've talked to my doctors but they don't have alot to offer about it, and maybe your guy has talked to his doctors and they've told him the same thing. I know I feel guilty about not having energy and whenever my husband makes any comment about my being tired, no matter how well-meaning it is,it makes me feel awful. Just something to think about.
Posted 7/14/2008 6:34 AM (GMT 0)
I do everything that I'm supposed to. I see my doctors, take my medications, but the fatigue just goes with the disease. Some days are better then others, and of course other things can make it worse (like being sick with a cold). The only time I've REALLY had my energy back, was when I was on prednisone. I felt normal again. Now that I'm tapering off, I'm back to wanting a daily nap, and tiring easily.

So I'd try to remember that it can just be part of the disease, and nothing more can always do about it. My husband knows this, and realizes that I just may need to kick back and relax sometimes. Or even take a nap.
Posted 7/14/2008 6:36 AM (GMT 0)
I couldn't have said it better, sjkly.

Truly, this disease can be so draining that relationships, extra appointments, a social life all have to be put aside. You mentioned that he was managing to exercise three times a week. Most of us find that exercise is the *only* thing that gives us a little bit of extra energy, so please don't feel as if he is neglecting you because he feels he needs to be at the gym.

Is there any chance you could go to the gym with him? At least then you'd be able to spend some time together.

Best wishes,

I.
Posted 7/14/2008 1:15 PM (GMT 0)
I agree with the above. More doctor's appointments are so time consuming and expensive (when you factor in the time away from work and gas too especialy!!!) But, if his fatigue is to the extreme it would be worth him mentioning it to his GI just to make sure his B12 and Iron levels are ok. But other than that, sounds as if he is doing everything right. I know when I feel that way but still want to spend time w/ my hubby we nap together or rent movies!
Posted 7/14/2008 2:05 PM (GMT 0)
I am not sure if I understood you correctly he was taking hypnotism therapy for crohns? For what reason? Hypnotism therapy is not what I would suggest for this disease unless there is anxiety that is contributing to his stress.

I think a second GI is a good idea. In my experience pain and fatigue are just a state of life with this disease, especially when in a flare that is exasperated by life stress, including when exposed to virus or bacteria (it just takes more for us to fight stuff off).

The fact that he can still work and go to the gym with this disease is a good thing and it sounds like he has this disease pretty well under control.
Posted 7/14/2008 2:50 PM (GMT 0)
Hey navy - I was able to see a hypotist for free once (it was through my school) and he helped with my pain management. For about a month after I was hypnotized I interpreted pain differently. Instead of being physically hurt by it I was intrigued by the sensation. It is very hard to explain but it did help. My doc however didn't like it because I was not yet diagnosed and he was afraid that I needed to feel the pain to be warned of something bad happening (like appendix or what not).
Posted 7/14/2008 3:14 PM (GMT 0)
Does he have regular labs done since he is on the imuran? I had to come off of it because it was messing with my liver, and I couldn't believe the difference I felt off of it. I felt so much better.

I am sure that he does know his crohns, as we all do, but my opinion is that it never hurts to see what another dr. has to say. Maybe they could help him so he doesn't have to live with the fatigue.
Posted 7/14/2008 7:43 PM (GMT 0)
OK I'm going to get into trouble for this ,,,but,,,would it be possible to be hypnotized and the suggestion planted that you dont have to go to the restroom ??? Would that work or would the sensation of of your finger hurting mean you had to go ? Would foot pain mean it was too late ???? Sorrry Treb, I have a warped view of life..
Posted 7/14/2008 8:29 PM (GMT 0)
I think you have a couple different issues here: one is his health, one is your place in his health (can't quite find a way to say that). I mean, he is an adult and can chose what he does next. we all have had problems with loved ones who try to gently push us to do something more or different...I, for one, don't love that! I want my loved ones to allow me the freedom and respect that shows I am smart enough to do what seems right at the time. it is fabulous to want to help, it just is a delicate issue. as was mentioned by others, each new doc, treatment, test takes SO much out of a person who is already ill, so these suggestions aren't often welcomed.
Posted 7/14/2008 9:55 PM (GMT 0)
Treb, has he had is B12 levels checked? Low B12 is common with us and it cause annemia which results in terrible fatigue. A b12 shot in the rump on a monthly basis makes a world of difference for me.
Posted 7/14/2008 10:41 PM (GMT 0)
Yes it is possible sniper, but hypnotherapy is not in general really well thought of in MFT.

Maybe betagirl has a different perspective on it given that she is CHP, so hopefully she will stop by.
Posted 7/15/2008 12:54 AM (GMT 0)
Hi Has he had a change in meds in the last three years?lol gail
Posted 7/21/2008 3:53 AM (GMT 0)
Treb,

I truly understand how you feel. I am the wife of a Crohn's patient, and it's the most frustrating thing for me to handle. I had never heard of Crohn's before I met him, and I researched it extensively before we married. I also went to his appointments to meet the doctors and ask questions. It is very difficult being on the "other side" of this disease. My husband feels that he knows more about his condition than I do and gets very irritated with me if I ask questions. I really am not trying to tell him what to do, but I need to know what is going on in case I have to make a decision in an emergency situation. It also falls on me to handle most of the household and yard work while taking care of two children, managing our finances and trying to run my own home-based business. That frustrates him even more and makes his condition even worse. It's a tough thing to handle, and there are days that I wonder if our marriage will make it. The best advice I can give you is to try and respect his decisions concerning his condition and do everything you can to take care of yourself. Eat right, exercise and try to relax when you can. Offer suggestions if you feel you need to, but don't be surprised if he resists or becomes resentful. From what you have said, I feel he is handling things pretty well. Unless something drastic happens that the current gastroenterologist doesn't take care of, I wouldn't push that issue.

Good luck!
Posted 7/21/2008 6:50 PM (GMT 0)
Fatigue is also a problem for me but i found that since I have been on the B12 shot that my energy level is better, I also take multi vitamins which helps.

In regards to colds, if I catch a cold I am out for over a week, I live in Toronto, Canada so i'm not sure if you are Canadian or American but I take Cold FX when I feel a cold is coming and this as helped me alotttttttttt.

I'm not sure how you can make him listen but it will be hard but i would let him know you care about him and did researxh on the disease and want to help him.
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