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CraigS870

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I am here in search of some support and guidance. My wife was diagnosed with CD when she was about 12. When she was at that age, she was put on prednisone and gained a lot of weight. She hates thinking about that time of her life, and she gets really upset when she does.

Well, we just found out Monday, that she is going back on Prednisone. I believe she is on 13mg. She is completely upset, and has not stopped crying for 3 days. She is so terrified of gaining the weight and "puffiness" with the prednisone. I told her I was there for her no matter what, and that I would help in any way possible. From what I have read, prednisone slow metabolism, increases water retention, and causes moodiness. She says there is no way to fight off the weight while on prednisone, but I cant imagine that being the case. I am going to come up with a diet and excercise plan that I think we can follow together. Hopefully this will help. I figured low sodium, carbs, and sugar, paired with a good exercise program will at least slow down the weight gain. Am I wrong here? I desperately need some help. I do not want my wife to go into a state of depression over gaining some weight.

I also need some guidance in what I can do to help. It is really hard and frustrating for me to see my wife upset all the time. I am doing my best to understand what she is going through, and I am reading as much as I can about CD and treatments. I want her to be her happy self that I am used to. Please offer some advice if you can.:confused2:
 
Body issues for women range from the mild to the moderate... as in full body dismorphia.. (sp). Moon face and weight gain is common to pred, and since that is how her body reacted the last time, it is quite likely it will do it again. I know that you want to help... re-assurance from you might help - tho many women seen to dismiss the opinion of their hubby's often in these matters.. but you can try it.

The thing of it is... is this her first relapse? Has she been in remission since she was treated with pred? If she hasn't had major issues with the disease in between now AND original diagnosis, MY FEAR is that she may not treat it with the respect it is due. Concentrating on appearance at a time one should focus on their health... well, that sounds to me like a disaster in the making. Dieting to maintain weight SHOULDN'T be the formost goal, regaining ones remission should be. These are extremely precious AND often rare commodities, getting back into stable health should come first. Focus on med, diet N exercise plan that puts getting healthy FIRST. And read some of the posts on here to see how BAD things can get. Being blessed to have a mild or moderate outbreak of this disease the first time or two doesn't guarantee this one or the next will be.
 
Kev, thanks for the reply.

Trust me in that my wife's health is my number one priority. She has not followed a good diet in quite some time, and her GI is sure that is why she is having this pretty bad flare up. They have been trying all different meds for a little while, but to no avail. That is why the GI put her on the Prednisone now.

As for how bad she has had it before, I know that she was rushed to the ER at the age of 12, and had 2 surgeries to remove portions of her small intestine (I think). She has told me before that it could happen again without any notice. I guess more than anything I am scared. It is something that is very hard for me to understand. Reading the posts on this forum have helped a lot, and I look forward to more guidance from the members here.
 
Hello Craig and welcome to the forum. :)

I do hope you will be able to take time and read through the posts here
as I know that you will find them helpful.

In order for your wife to be on Prednisone again I have to assume she has had a recurrence of the disease or a flare up of some sort.

I have to say that during a flare up bad enough to go on Prednisone,
this is not the time to be doing weight reduction exercises, unless specified by her doctor.

Rest and a proper diet..but most of all, give the body time to heal once again.

I have been on Prednisone, gained weight, and had the moon face,
mood swings and hungry cravings.
BUT I also found this to be a small price to pay
to get my gut to the point of being healed as much as possible.

It was 10 years ago that I was on Prednisone..
and thankfully since then I have led a fairly 'normal', for me, life.

The past few years I have been able to add more foods to my diet
than at the time of diagnosis and of course with that came weight gain.

I saw my gastroenterologist a month ago and asked him about my weight gain.
I believe I could stand to lose 10-20 pounds.
He answered me with-
"Your weight gain tells me we have the Crohn's under control"

I came away from the doctor's office with a different outlook on my body image.
Yes, I have gained some weight but, I also got some of my health back.

In closing I guess what I am saying is...Now is a time for healing.
Worry about the weight later....if at all.

Oh by the way...I found a good way to do light exercise is with a 'walk aerobics'
DVD which can be done right in my living room, with no need to worry about being out and having to find a washroom, or the weather.
Still....with a doctor's permission.

All the best to your wife...and you.
I do hope you continue to keep us posted as to how she is doing
and please keep telling her she looks terrific!! :)

Heart hugs~Nancy
 
I'm quite tired right now but I have another thing to say.

Losing weight although difficult is not all as hard as gaining weight while having Crohn's. For about four years I tried to gain weight and had not be able to get about 130. After Remicade I made it to 140. Now after a flare I'm back to the 120's somewhere but hopefully I will be able to make a better weight soon. Also I think a large part of that 140 was stool so I wasn't actually much bigger than I am right now.

I'll be back later
 
Thanks Jeff & Nancy. I value everyone's input, as this is a rough time. I hat seeing my wife in pain. We will talk with her GI and ask about diet and exercise. I will reiterate that her being "skinny" is of no concern of mine. I want her to be health, happy, and back to her old self.
 
I couldn't agree with Kev more. Her weight is not the issue and focusing on a diet isn't going to do anything but cause her frustration. That is not to say she shouldn't avoid trigger foods but I align with Kev that she needs to only worry about her health (if that involves a diet, ok).
If you want an emotional mess ask a woman on steroids in a flare to control her portions! It's not just about slowing your metabolism it's about the insatiable appetite that steroids causes. Believe me this is not mind over matter.
Even if she gains 20 lbs. she will lose it afer she discontinues the steroids.
It's time to focus on the treatment and not the side affects. If she's that emotional about it she should consider counseling or an anti-depressant.

Also, if she's on 13mg of steroids that is a fairly low dose... Most of us in a flare are started at 40-60mg daily. If that is her strength then she may have minimal weight gain.

Please try to help her focus on the importance of getting better.
 
From all of the responses so far, I guess I came across differently than I feel. I am not worried about weight gain at all! I told her that I want her to get healthy. I believe that part of this is to start watching what she eats. She has eaten so horribly in the recent past, and her GI thinks this is a large contributor for the flare ups. It is not my idea to control m wife's intake. It is her idea, but she wants me to help.

When/How should I suggest counseling for the depression this is causing her?
 
I think well at least me, I talked about weight more to your wife then to you. Let her know what we think and invite her to this forum. I also forgot to welcome you to the forum so welcome to the forum, I'm so sorry you had to come here though.

I'm a health science major so I believe in diet and exercise to maintain a healthy life. But when your sick I learned that you can't really focus on your total body. Don't work out, which normally goes against what I normally try and preach but focus on your intestines. The intestines in this case need the work out and for that they need medications, diet(check the forum for many of them), and rest. She needs to rest and let her body recuperate from what has happened. Without rest the body doesn't heal and no results will come.

For depression, I have suffered severe depression earlier in my life and finally got over it after going through many struggles. I would say that you should complement her. Make her feel really amazing and keep her mind off of things.

Best of luck
 
Us women are sensitive and it's hard to say the best away to approach her about counseling. I have had doctors and my husband suggest it for me but I have refused myself ( I guess that makes me a hypocrite). Anyways, I would offer to go with her to counseling. Explain that people on the forum suggested it.

As for the poor eating. Some people may agree with her physician and you. I strongly disagree! You should find documentation all over the place that says there are no definitive answers about whether diet causes a flare. All 5 of the GI specialists that I have seen have denied a link between diet and flares. Foods can make your symptoms worse but not cause the flare.

I do think people are assuming you care about your wife's weight but that is only because you are saying her recent diet is poor and that you will set up a diet plan for her. Nancy Lee is right about diet and exercise.

Your job should be to tell her not to worry about her weight (a lot!). When we are in a flare it is nearly impossible to eat too poorly. The constant stomach pain and diarrhea makes us pretty uninterested in eating greasy food and the like.

On a personal note. I am on zoloft 100mg and think that this helps me keep my stress level low. When I decrease or discontinue I notice that I'm on edge more. So, I figure why not keep taking it. My doctors support it.

Amy
 
hi craig, & welcome to the forum, and hi to your wife too.

i do understand how emotional she's feeling right now. a recurrence of crohns is bad enough in itself to get your head around, particularly if last time it reared its head resulted in such trauma for her. and then there is the upset at knowing all too well what steroids can do to her appearance. but by the same token, she knows that the same meds can help her symptoms and hopefully put her back into remission.

its a tough time, for her and for you - you're both facing the news and dreading the side effects. i have to say, its so lovely to hear how supportive and caring you are, not only about the health issues, but about her self-image and emotional state too. with a husband like yourself by her side, i'm sure she'll feel 100% supported, which is exactly what she needs.

i would agree with others' sentiments here that an exercise regime isnt probably the best thing to embark on at the moment - crohns takes its toll on our energy and strength, and we need to conserve it when its active, not expend it. but theres nothing wrong, in my opinion, of agreeing a healthy eating plan for while she's on the meds, as long as its food she can tolerate ok, so that when the steroid treatment is finished, all she has to deal with is the actual side effects of the meds, not extra weight gained through increased eating/appetite.

i wish you both all the very best, and please let us know how things are going.
 
Yeah, Craig... Sorry if my welcome came across more as a condemnation? Let me roll that first post back... Welcome to the forum. I hope you and your wife find a lot of help N support here. 1 key thing to remember is that whatever happens on the pred, pred is only a short term med. Your wifes GI will only have her on it long enuff to get her stabilized. The upsides N downsides of pred sort of balance out; but it does work to halt N reverse flares, spirals, etc..

I'm sure her doc will present her with a number of medical options in long term treatment of this disease... When you have that short list, be sure to check here for people who've been on them, their experiences, any recommendations etc..

As for diet, tho the definitive jury is still out, there been recent studies done (& posted on here) AND the Japanese have a history of treating this disease with diet... So, if you pressed me for a hard yes or no, I couldn't honestly give one, but I think it is better to err on the side of caution... And, healthy people ARE advised by their doctors to eat a healthy diet; it's just common sense for us with major intestinal woes to do likewise. Just my 2nd 2 cents worth... okay?
 
Well, unfortunately Craig, others and especially I have badmouthed pred's reputation a lot on here, so coming here would have to have that factored into the decision for you guys, most talk of pred is not so great here. Rightfully so in some respects, as I hated it myself (did a thread throwing a cyber party because I was finally off it after 6 months), but that's because I never got what I was supposed to out of it. It made me temporarily better (but not all the way) for a couple weeks back in the fall, and gave me nothing but trouble until I was off it last month. So it's not been put in the best light by myself, sorry to say. On the other hand, if she can get what her flare needs to get out of it, it's probably worth it as it's been stated. I never got that, though.

You haven't gone into much of what her degree of severity is at this time, but as was said if prednisone is now brought into the battle then chances are it's not too great, so she's probably already down and out. The thing with pred is it's the appetite, not really the metabolism (at least I've never read it works via the endocrine system so much as the appetite increase), if she can try to fill up on things that are first off agreeable for her system, and secondly, if possible, not prone to pack on weight but fill her up, it may help stiffle things. But like it's been said, primary concern should be finding remission again. If she's able to and the docs say it's okay, light exercise shouldn't be a problem if you ask me, though, such as walking etc...

Also to repeat, 13mg would be a pretty low dose, if that's correct, so the plus side if that's true, should be that side effects should be mitigated some.
 
BWS thanks for the response. The reason I have done so much reading on the Prednisone is because of the stories my wife tells me from when she was on about 10 years ago. She hated it so much that she told me she would rather have the pain and have to have surgery than be on the prednisone. I think that was just emotional, and I do not think she really feels that way. So, to hear all the bad comments about prednisone is no surprise to me. More than anything it shows me that she is not exaggerating about being on the meds. I know I have a lot to learn about CD and prednisone.

I do not really know how to rate the severity, but this is by far the worst I have seen her. I know her GI has tried several other meds to get it under control, and prednisone was her last resort. So this makes me think it is fairly severe.
 
Something I did back when I had a doctor that I liked was that we would do a 1 week course of prednisone during the really bad times and then I wouldn't take it the rest of the time. While I was only on it maybe 1/4 of the time or a bit less that meant 1/4 of the side-effects. I found it to be a good balance of side-effects vs. symptoms and the spurts of rest meant I even got a small period of healing in to help me with the times when I wasn't on the steroids. I did gain some weight and such but it wasn't nearly as bad as it would have been if I was on prednisone 100% of the time.

The only thing that concerns me is that if she went in at 12 she's probably a fistulizing crohnie which means she may not get the luxury of just being miserable for short periods to get a break from the drugs because during that period her body is tunneling a hole off towards some mystery location.
 
From what I read recently of prednisone you see almost no emotional side effects when taking less than 20 mg. Also I've read that you can quit anytime if you have been taking it for less than 3 months without many side effects. Finally the main bad side effects of prednisone are that it ages you faster. All the major organs get xtra wear and tear.

And I do personally believe that diet plays a role in the disease, and you might try tuna and rice. The studies I've read controlled the disease with an elemental diet. Which ended up working as well as prednisone. The elemental diet gives you all your basic amino acids, and no fat.
 
Seems I was one of the lucky ones who was deleted. I am back now, trying to learn more. I appreciate the help guys!
 

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