Keeps going downhill

[Brenden]

Hey everyone, been starting to feel the depression starting to kick up again after my recent colonoscopy didn't have such good news. I've already gone through this once before so I'm trying to do my best and stay positive, keeping the negative thoughts out of my head. If you read my story you may have known that I certainly do not have it as bad as other people with Crohn's so if i come across as whiny I apologize that is not my intent.

My stomach problems continue to get worse and on top of that I just learned that my GI has TERRIBLE reviews! I just happened to Google her name looking for her office address and came across a website that reviews doctors. My GI had terrible reviews, most of them very negative and with only a few positive. I know it doesn't represent all of her patients thoughts as maybe just the people with bad feedback posted and the people that are happy and content felt no need to write a review but nonetheless it worries me. I just recently started a case with her and am having a hard time trusting her.

I really haven't been feeling myself lately, probably due to the fact that I'm losing so much weight and haven't been able to get into the gym as much. I'm very tall and skinny and should be eating a lot if I want to bulk up, but as you know eating lots of food and trying to gain weight when in a "flare" is not exactly easy. Ever since my last trip to the hospital didn't go well and seeing all these terrible reviews for my GI has seem to broke the camels back so to speak and just needed someplace to vent.

I'm hoping the biopsies come back clean on Thursday when I revisit my GI. I plan on calling my GP, family doctor afterwards and make an appointment. He's been my family doctor for quiet some time and is honestly a great doctor. I trust his opinion and haven't seen him in a while so I'm going to update him on my situation and ask him if he recommends seeing a new GI. That seemed to be the best idea I could come up with and helped me feel a little better.

Again I apologize for the long post. Feels good to get all this off my chest on this forum as I feel you guys are the only people that really understand what I'm going through. As i'm still young the only advice i get from friends is "oh... that sucks" and it honestly just infuriates me.

Hope you're all having a good weekend

 

[IJP]

Everyone goes through periods when the world seems against them, don't worry. The important thing is getting stabilised and ensuring you feel in control. If that means changing your doctor, so be it. Take care of yourself.

 

[Brenden]

Everyone goes through periods when the world seems against them, don't worry. The important thing is getting stabilised and ensuring you feel in control. If that means changing your doctor, so be it. Take care of yourself.

Thanks. I just wish there was someway to tell if this GI actually knows what shes doing. Any advice from adults is appreciated as I go to all my GI appointments by myself and the hospital as my parents aren't very supporting of this disease. They believe that all my problems would be fixed if i ate healthy, well I've been doing that for about 3 years and I'm still sick soo...

 

[IJP]

I am sorry to hear that, I know it can be embarrassing so taking a friend isn't always an option, but is there someone you can talk to? Could you give some information to your parents to help them understand more and to show what you go through? On your doctor, it is you who the disease effects, so you have to feel comfortable with those that are treating you, trust me you might be dealing with them for quite a while! Have a chat with your GP, and then if you wish, change your dr. You are not alone in your struggle buddy.

 

[zilla7777]

They believe that all my problems would be fixed if i ate healthy, well I've been doing that for about 3 years and I'm still sick soo...

I can definitely relate with this. I keep hearing "You're losing weight because you aren't eating enough." Without the idea that I actually can't eat enough to sustain myself. It gets frustrating because it ends up in circular arguments which nobody wins. :ybatty:

As was said earlier, as soon as you find stability, you will start feeling MUCH better. Trying to gain muscle with Crohn's is damn hard, and it always seems like the moment you get there, it is all taken away with the next flare. Personally I've found it hard to live with my body image of flab with no muscle.

To help you gain some weight, have you looked at EN diets? They work as a form of inducing remission instead of a maintenance sort of treatment and seem to work pretty well for me with putting a bit of weight back on. I've had positive results from them similar to Pred, and I'd definitely go back to it if I had to. It's just a bit difficult with the whole no eating thing. On the bright side, you save so much time otherwise spent cooking!

If you are uncomfortable with your doc, don't hesitate to change if they are too awkward for you, unable to help effectively; or even for things like them not giving you alternative means of treatment when others are available. Just don't let your choice rest on a non-compulsory review. People are generally reluctant to give praise but will sing from the hills as soon as they are rubbed the wrong way. (I see you've already put that forethought in though.)

Hope the best for you!

 

[staloffn]

I`m with you on the effects of not working out and the brain. been in a flare for nearly a year now and went from lifting everyday to not at all. seriously is not good for my mental status either. I`ve dropped 40lbs in the last year, some of that was ok around my core but a lot of muscle/ strength was lost. it can be hard to watch everyone around you keep getting on with their lives while you feel unable. it must be nice i think to myself. On the dr. front... if you don`t trust them or their judgment move on. it will only cause you stress wondering if your Tx plan is right for you.

 

[Brenden]

To help you gain some weight, have you looked at EN diets? They work as a form of inducing remission instead of a maintenance sort of treatment and seem to work pretty well for me with putting a bit of weight back on.

Can someone explain more to me about this EN Diet? When I google it i just see food for dogs and cats. Lol

Thanks for your replies everyone I'm feeling a lot better today. Im going to the gym tomorrow and just going to try and lift light. Hopefully my joint pain doesn't get in the way.

 

[hunniebunn88]

Hello Brenden!
I'm sorry to see that you are having a hard time with everything, sending love your way! And I know what you mean about friends trying to give support since many of them are uneducated in the subject. They all care, but probably don't know exactly what you are going through. Which is why you have us. Many of us are probably going through exactly what you are going through, so don't be afraid to vent/ask questions.

Don't worry about bulking up right now, worry about your health first. Once you are over this hump and get into remission (which you will in time) you will be able to focus on it. I am currently going through a flare as well and am losing the weight, but not in a good way. Trying to get ready for my muay thai fight and going to the gym 5 days a week gets harder and harder each week. But I know that I need to slow down and listen to my body, which is hard, but has to be done.
Don't worry about the reviews, unless your GI has a malpractice suit, you need to take it with a grain of salt. If you are still unhappy with her bedside manners, then go and ask for a second opinion.
Hoping all the best for you my fellow Canuck

 

[zilla7777]

Can someone explain more to me about this EN Diet? When I google it i just see food for dogs and cats. Lol

Thanks for your replies everyone I'm feeling a lot better today. Im going to the gym tomorrow and just going to try and lift light. Hopefully my joint pain doesn't get in the way.

Sorry, I should have elaborated a bit more!

Enteral Nutrition is a means of getting your entire nutritional requirements through specially formulated liquids instead of solid food. It isn't a way of maintaining the illness like Humira, Remicade, Imuran and the like would do, but behaves like Prednisolone in the sense that you use it temporarily to enter remission. They have all the nutritional requirements you need to sustain and even gain weight, having about 1-1.5 calories per ml.

Generally a stint on EN will last about 8 weeks, and you need to keep to the strict regime of what you are set by your doc or it might not work. It's not really that hard if you have things to keep you preoccupied really. I'm a big foodie and I managed it.

Specifically, the formula I was on is called Modulen IBD, but there are others like Ensure and Peptamen. I can't vouch for the others, but the one I was on tasted alright once you got used to it.

More information on it can be found on the wiki

EDIT: Also, with joint pain; have you tried using resistance bands and ridiculously light (Like 1kg) weights? I'm not sure if it's upper or lower body. But strengthening stabilising muscles helps a good deal with pain, and can help reduce the chances of your joints giving way. They're only really exercised when you use weights light enough to not rely on your larger muscle groups though, so heavier exercises won't work them enough (funnily enough.) Such a small thing can help a fair bit with benching or squatting that little bit more, or just not almost taking your arm out of its socket when you do shoulder presses.