Recently diagnosed, feeling like hell

[em6263]

Hi guys.

I was diagnosed CD about a month ago. Since then, I've been taking Lialda, and just finished up a two-week course of a hydrocortisone enema (gross and embarrassing, I know, but most of my issues are in my large intestine).

Overall, I've been feeling better - at least I'm not getting the same horrible pains and bleeding I had before. The issue: I still have D. I've been eating nothing but plain white rice for a month, and I STILL have D. I'm working two jobs at the moment, and it's getting increasingly more difficult (impossible) to get through the day. I'm so far past the point of "hungry" ... I feel like I'm actually starving to death. The other night, I ate a scrambled egg because I was just so exhausted and desperate for something with some kind of nutritional value. And I was violently ill all day the next day. Same thing happened when I tried to eat a banana. Even when I just have the rice, I still get sick, but it's not nearly as bad.

I've got an appointment with my GI next week, but was just wondering if anyone had any suggestions in the meantime? I'm really struggling here. I'm just really tired and depressed. I don't want to do this any more. I miss my old self.

Thanks for listening.
Em

 

[Terriernut]

Em, I think you need to consider liquid only, but I am guessing your GI will sort you soon. Ensure Plus for instance? It has the calories and the vitamins. Have they given you any oral pred? From the sound of it, you are still flaring. How long since you've had all your blood work done?

I hope your GI can get you sorted out and feeling better. I personally had the big D about 30 times a day, and it's just impossible to function like that.

I would guess oral pred, liquid for a while, and possibly Azathioprine or 6MP before you start weening down on oral pred will be what the GI will suggest for you.
Sorry, I hope things improve for you very soon!

 

[changeiscertain]

Hi Em, whenever I can't hold anything in I drink a nutritional shake called Vega One mixed with Almond milk. It's very sound nutritionally and it actually tastes quite good. If you have a Whole Foods around, they sell it there but it's much cheaper at Amazon. Hope this helps.

 

[mickey]

You mention what you are eating, but not what you are drinking. Right now, sounds like you may want to stick with only water or ginger tea. Ginger tea may help calm your stomach a little. The rice may be causing the diarrhea; so you may want to try a potato instead? Grains can irritate the belly for some people. feel better. it is difficult to get on track

 

[em6263]

Thank you all so much for your replies and suggestions. I've been drinking an awful lot of gatorade... my doc actually told me to do that, because I've been so dehydrated, but maybe that's been a problem. I just broke down and emailed her about all this, asking if she has suggestions for what I can be doing before my appointment next week. I feel awful bothering her about this, but I'm really at the end of my rope.

Changeiscertain - I'll definitely check out that shake. I'm in San Francisco - no worries about finding a Whole Foods.

Terriernut - first of all - you have a very cute dog. I've not taken any oral steroids yet - my doc wanted to try the other way first because of fewer side effects. And I haven't had my bloods done since I was in the hospital 4 weeks ago. I think she's planning to do that when I see her next week. I just want to get to the bottom of this. I know I sound like a big baby, but I feel like I'm losing my mind. I just want it to stop.

But yeah - thanks again, everyone. It's good to know I'm not alone.

 

[Terriernut]

Em, you are newly diagnosed, so it is no wonder everything is a bit uncertain for you!

You ARENT bothering your GI. That is what they are there for. I think you should ask if you have an IBD nurse as well. They are a great resource in between GI appointments.

Gatorade is good. But you are going to need more nutrients. Rice alone isnt good, at all. How about bananas? Potato, is good, but does contain some fiber.

Can you tell us how they diagnosed your crohns? Where is the problem exactly? (I personally have crohns colitis, so all large bowel, mine used to be just the sigmoid mostly, now moved into the transverse part of the large bowel)

 

[em6263]

Thanks Terriernut.

I've always had issues with D & constipation, but was too embarrassed to tell anyone about it. I just assumed I had a weak stomach and that I could deal with it. Last month, I woke up in the middle of the night in terrible pain, after several days of feeling really run-down and like I was getting a bug. I went to the bathroom and began passing blood, which had never happened before. There was quite a lot of blood, and I panicked and woke up my boyfriend to take me to the hospital. They did a contrast CT and found a lot of inflammation, so I had a colonoscopy two days later, and here we be. My descending and transverse colon were pretty chewed up (terminal ileum was ok, though), and I was referred to my current GI.

I'm lucky because the job that's my main source of income has been very flexible and supportive, and has allowed me to work from home when necessary. I know that things could be so much worse. I guess I'm just having a really bad day. I really can't thank you guys enough for your suggestions and support.

 

[mickey]

Gatorade may have some things in it that are troubling you as well. Stick to water to be safe and reduce inflammation. Get on some good probiotics as well; they will help your belly.