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Ulcerative Colitis
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Posted 10/1/2013 2:15 AM (GMT 0)
A few weeks ago, my mother in law actually told me that to gain weight, i just needed to eat more. It was all I could stand so I put it out there and told her, sure... except when I eat, I throw up and have violent spasms where I drop about a pint of equal parts of D and blood. Her face went white and she said "I am only trying to help." That was actually pretty tame compared to what I felt like telling her, "Yeah... I never thought of that. To gain weight, I have to eat more? That's brilliant. Just like for you to lose weight you just have to eat less."

I know it isn't meant to be ill-intentioned, but at some point people just have to back off.

 

Posted 10/1/2013 2:29 AM (GMT 0)
I'm sorry to hear what happened! I know it can be very frustrating. Others can't truly understand what we go through or how we feel. I am sure we have all had days where we would like to tell someone how we really feel about their advice or attitude.

Draw on the support of those on this forum. I know it has really helped me.
Posted 10/1/2013 2:34 AM (GMT 0)
Thanks... and you are right. This forum is the only place where I feel like anyone understands and doesn't try to "cure" me. At times, I feel like my family is bothered by me.. that I don't have energy or just need to be in the bathroom a lot. My sister is convinced that it is all about my diet and wont stop sending me e-mails about how gluten is my problem despite the gazillion times I told her that I was gluten free for about 6 months and all the while this flare continued to progress. I mean, I have tried everything from diets, to medications, to probiotics, to stress relievers, to herbal supplements. Do people think that we want to feel like this???
Posted 10/1/2013 11:11 AM (GMT 0)
If it makes you feel any better I have lost about 20lbs and am still flaring, so I anticipate that number to continue to change.

My neighbor the other day told me that all diseases of the spirit start in the gut. He told me I need to get back to my spiritual roots and stop messing with modern medicine. He said I need to deal with whatever family or abandonment issues I am having and get back to my spiritual center. It took every ounce of me not to unleash on him!

I also had a friend tell me I need to immediately cut gluten, add plenty of red meat, fibrous veggies, as well as a fiber supplement, and I need to drink apple cider vinegar everyday. I promptly asked if 1. He was volunteering to come clean up the puke that would ensue from the vinegar and 2. If he was trying to kill me!?

People don't get it...I am still new enough to all of this that I have no idea what in my diet makes things worse or better. It seems regardless of what I consume I am somewhat okay during the day (besides a few bm's and exhaustion) and then all hell breaks loose at night!
I try to ensure people that I don't want to feel like hell all the time and I do everything I can to make sure I am eating...it just doesn't matter!
Posted 10/1/2013 11:31 AM (GMT 0)
I think that is the worst part for me. The frustration of trying things, be it diet, medication, supplements, etc... And then, I see (or perhaps believe or want to believe) improvement... only to fall back further. Everything for me these past 8 months has been 2 steps forward, 3 steps back. There is no single recipe that works for all, and it seems in some cases there is no recipe at all. But going through all the options, one at a time has been exhausting both mentally and physically.
Posted 10/1/2013 11:35 AM (GMT 0)
But everyone has an opinion on what you should do and try!
Posted 10/1/2013 12:54 PM (GMT 0)
And when solicited, opinions/advice is most appreciated. I have often come here and asked for advice from people that I know are either in a similar position or have been in a similar position or at least are knowledgable about this condition.

My sister-in-law has IBS and is convinced that she is one of those people. I am not making light of her condition because I know that is no party either and she probably does understand some of the sypmtoms eg. the urgency, bathroom availabilty, etc...

However, telling me that medication isn't the answer and that all I am doing is trying to mask the problem is really not helpful. And, for the record... yeah, I would like to mask the problem!!!
Posted 10/1/2013 2:20 PM (GMT 0)
Crohns and colitis are not fun diseases to have. I seen a poster that said my outside might look fine but if you turn me inside out that's another story. It's so true. Just because our body isn't covered with sores you can't see doesn't mean we aren't sick and hurting. I hate crohns. I see my GI today and I know he it going to be mad at me. 6 weeks ago was my last appts. He said I should start gaining some weight. How can you gain weight if you always have diarrhea? You can't. I want to gain weight. I started at 198lbs. Today I weigh 108lbs. I look horrible. All skin and bones. Who in their tight mind would choose to look like this. Sadly my daughter hates to hug me because I am so boney. Sorry to go on a rant like that. :(
Posted 10/1/2013 2:27 PM (GMT 0)
I eat VERY calorie dense foods... And I'm still losing, I just can't handle the volume I need- I'm eating around 1000-1200 cals a day.
I know I need more protein, but the thought of it makes me sick!
They told me to do boost or ensure- that didn't go over well! I can do shredded chicken with creamy soups some days, so I do when I can! I have had sushi twice with just rice, fish, avacado and cream cheese- that seems to be one of the better tolerated things for me.

What else can you do!? Just in an attempt to get calories in, if something sounds remotely appetizing, I eat it...mostly carbs and soups!
Posted 10/1/2013 2:57 PM (GMT 0)
I agree nursemb23. That's me. I eat what I can. Have never been much of a meat eaterr. I can't eat raw vegetables or fruit. Lactose intolerant. I do drink 2 boost a day. I like those. I have cried many nights trying to force myself to eat. I HATE CROHNS
Posted 10/1/2013 3:08 PM (GMT 0)
i'm a big believer in blood type eating - for some lucky folks like me, diet changes make all the difference in the world in dealing with uc - for lots of others, not so much - BUT, i do think that eating the right foods for YOUR body will make you much healthier overall and better equipped to deal with the effects of uc - I do agree with eating more, as long as it's the right more !
Posted 10/1/2013 3:08 PM (GMT 0)
Thank God dairy hasn't been bothering me! I drink chocolate milk every morning...it seems to make the meds not bother me as much!
But I have bagels with butter, potato soup, chicken broth, grilled cheese, and cream of chicken soup with shredded chicken on biscuits, warm foods seem to better than cold!
I'm so sick of powerades, gatorade, water tastes like metal from the meds....
Sorry I'm in a crabby mood....
Posted 10/1/2013 3:46 PM (GMT 0)
Dybye... No need to apologize for the rant... isn't that all this thread is?

At this point, I don't get hungry. I don't eat because I want to... and there really is nothing that I can say I enjoy. It's more a matter of what I can keep down, in, and not hurt like hell when it does come out.
Posted 10/1/2013 3:48 PM (GMT 0)
Same here JC! Something is not appetizing about food when you are hanging out with it in the bathroom a little later.
I forget to eat and also force feed myself...it's hard to find foods that even sound good!
Do you guys have nausea bad? That does not help with wanting to eat either!
Posted 10/1/2013 4:52 PM (GMT 0)
dybye, I would be careful with the vitamin C. I have crohns colitis and vitamin c in supplement form is not good for me. However I eat mango and blueberries in my smoothies without problems.

Just a thought...

Feel better
Posted 10/2/2013 12:49 PM (GMT 0)
I don't have nausea that much... but once i eat food, really anything... everything starts to churn and gurgle. Almost the second I take a bite. Most of the time I can't finish eating whatever it is, no matter how appetizing it appeared at first. So... i usually cram a few bites in and then wait to see what happens. Most of my vomitting happens from the pain during BMs. Eating anything frequently triggers the the BM... which triggers the vomit.
Posted 10/2/2013 1:05 PM (GMT 0)
I know how you feel.

Without gloating when I'm well I can eat anything, when I'm poorly, hardly anything.

I've had friends call me anorexic / bulemic behind my back, one even went to see her nutritionalist friend for a 'meal plan' for me (i was not happy), one girl once said "oh, you're freaky eater girl" gee thanks, because a mutual friend had told her. I've had friends get in bad moods because I ask for a UK size 6 dress (us size 2) but they don't understand that I don't want my hip bones to stick out, to be needing the loo and that every time i put on a pound i get poorly and lose it.

My family cut out every article they find. luckily my housemate has crohns, been a life saver because we've both laughed about all the stupid things people have said to us.

but one of my friends said after having a camera tht it was the first time she realised she really wasn't beautiful on the inside! could be worse, could have sores on the outside.
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