HealingWell
Search Close Search
☰

Getting worse....

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/16/2013 4:05 PM (GMT 0)
Hi. I posted in UC, but for some reason feel more attached to you guys right now lol. Feel free to kick me out.

So yeah I started 20mg pred on Friday was told I was so mild I should see results in 2-3 days. If anything I'm worse and its emotionally horrible. Last night drug myslef to the department xmas party...right away hid in bathroom and it looked like I passes my guts mixed with raw hamburger! Freaked me out! I kind of suspect the Lialdia, but maybe I'm desperate? Wednesday I forgot to take it, and I was just drinking apple cider, water and grape juice for my prep, and felt a little okay. But that is a lot of sugar. Then back on it and I cannot even start to function without pain meds...and they give out fast. I'm just nibbling ground turkey and avocado today..not much of it...had started SCD but now have a complete aversion to broth and carrots. I know the organic turkey and avocado is both SCD and low residue, and if I don't eat I get sick and weak and dizzy. ugg. Nothing makes me feel better so dont even know how to find my safe foods.

Going to call doc here in a minute when my baby takes his nap and I feel a little more emotionally stable...maybe not take the Lialdia a few days? I know he told me people have problems when they won't take their meds, but I'm so confused right now. The pictures I saw of my colonsocopy Friday looked worse than the week before. It's gotta be the Lialdia...or am I looking for a scapegoat? I know someone recommended I ask about a rectal med, which I was too out to do Friday, but if I'm reacting that way to the oral, would the rectal be the same way?

Any thoughts? You guys seem to know so much and it just feels like to me there is so much info its confusing. I wish I could just have my doctor say do this this and this and i could say okay, no second thoughts.
Posted 12/16/2013 5:45 PM (GMT 0)
{{{{{HUGS}}}}}. This can be a very confusing time and steroids make some people legitimately crazy.

Your treatment protocol needs to include mesalamine enemas. It is possible you are intolerant of the Lialda, although it's hard to say at this point because you are changing so many things all at once. I read your post on the UC forum where you described your diet for the past couple of days and I agree with the responses you got there that your food choices are not helping you.

Please stop worrying about SCD or any other treatment through diet until you have a handle on how to get through this first episode. Go BRAT, or whatever it is you want to eat. If you don't have any appetite, make sure you're getting some calories by drinking apple juice or cola or lactose-free milk (Ovaltine worked well for me when I had terrible morning sickness). Ground turkey sounds fine. Cooked veggies. Baked potatoes. Toasted bread with butter.

20 mg of pred isn't very much and if you are feeling emotionally raw on this dose I think you should stop taking it. Get mesalamine enemas from your GI and start using them every day. Take your Lialda. If you are intolerant of mesalamine you will know pretty quick.
Posted 12/16/2013 7:27 PM (GMT 0)
You are right...I'm in a science profession, I should know not to introduce so many variables. I just got so vamped that I was going to get this. I'm surprised I've refrained so far from being on a ton of other supplements I've been reading about too.

Haven't taken lialdia yet today and getting by...will start taking it at night. Called and left a message with the doc nurse...she thought it was strange my cramping and bleeding was worse after pred and wants to talk to him. Will just eat a potato tonight despite my fear of it....nurse who also has uc told me its the best. I just thought hey, get on scd, get on meds....feel better fast. Gonna try some essential oils to stay calm.....
Posted 12/16/2013 10:07 PM (GMT 0)
Be gentle with yourself right now. It's going to take a while to sort things out. Heck, you just got handed a diagnosis you'll have to deal with your whole life- I'd be worried if you weren't emotionally raw after that.
Focus on getting some nutrition into you right now, don't worry so much about what it is. Avocados are one of the foods I can always get down, and always make me feel better. I like to drizzle mine with a little bit of olive oil for some extra good fat (olive oil with lemon juice and a a bit of sea salt on an avocado is a *really* nice treat). If I'm feeling really horrid, I start eating egg drop soup by the quart- there's no solids to digest, but it seems more substantial than broth. Boiled eggs are a nice protein I can usually handle.
I don't know if you're having nausea issues, but ginger helps me with nausea - I keep a bit of crystallized ginger around for cooking, and I'll snack on it if I'm nauseated. Earthfare makes a lemongrass-ginger tea I really like- lemongrass is great for fevers also.

Take things easy, as much as you can. I'm a strong believer in the healing power of hot baths, tea, blankets, old movies. Treat yourself in small ways- I always like to do my nails after my Humira shots. Hang in there.
Posted 12/16/2013 10:21 PM (GMT 0)
Hi wifeofmars,
Did the doc by any chance take a stool culture along with your colonoscopy? If you have an infection like c.difficile, then the Prednisone would make it worse because it decreases inflammation but lowers your immunity. I had c.diff after a Crohn's flare a couple of years ago, and it took us a long time to figure it out and diagnose it. If the Pred and Lialda are not working, then maybe ask for a stool culture. BTW most of the treatments for Crohn's and UC are similar, so if there is anyway we can help here in Crohnnie land, feel free to ask:-)
Posted 12/17/2013 3:53 PM (GMT 0)
Why yes they did. In fact I just got a call saying it came back with c-diff and now I get to take flagyl as well. And no more pain meds when these are gone....just Tylenol. I'm so upset......I didn't have it when I first went to the freak in hospital.....
Posted 12/17/2013 4:42 PM (GMT 0)
C.Diff. There you go! There is some serious experience on this forum with this nasty organism. Ask tons of questions about your treatment protocol and the duration you should expect.
Posted 12/17/2013 8:47 PM (GMT 0)
Hey wifeomars,
C.difficile infections can be quite miserable! It was the only time I ever told my GI that I seriously felt like I was dying! Hopefully the Flagyl will clear it up and you will feel better quickly. If that is the case, then you won't need the pain meds anymore. If you have more than one bathroom try to use one toilet exclusively and clean every friggin' thing with bleach. Some people have found Florastor probiotics help to prevent reoccurrence too. I felt better within 48 hours of taking the Flagyl (although the Flagyl made me nauseous and I needed anti-nausea pills--Zofran) Sometimes you need more than the 10 day dose, but hopefully not. At least you have an explanation for your symptoms! Can you then get off the Prednisone, or do they want you still to be on it? Oh, and you may or may not have gotten c.diff from the hospital. Those of us with Crohn's have a much higher risk of getting the c.diff from the inflammation in our intestines and bacterial overgrowth.
Feel better soon!
Posted 12/17/2013 10:11 PM (GMT 0)
Its good to know at least. Here I thought I was just a baby about the pain. We designated one bathroom mine bleached it and locked out the Kids!

They told me to keep taking pred and lialdia with the flagyl and give it time to work. Though I didn't take lisldia today and felt better....guess I'll see what happens when I take it tonight.

Heres to hoping I will feel decent for Christmas!
Posted 12/17/2013 11:43 PM (GMT 0)
Holy cow I just got time to read all about c. Diff and now I'm really scared! And that sample was done a week ago so it must be horrible by now! I didn't know it could cause that whole toxic megacolon. Would that be really obvious if it happened?

Well...gonna get a nice Epsom salt bath and try to not sorry, just let my body heal.
Posted 12/18/2013 12:48 AM (GMT 0)
Toxic megacolon is very rare. There are a lot of scary stories about c.difficile, but most people respond to one or two rounds of the antibiotic and do just fine. I think I had c.diff for two months before we finally diagnosed it, because we kept assuming it was a bad Crohn's flare. I did not have the typical massive D, but I had no appetite, nausea, and abdominal pain...so it confused my GI. Now we test my stool first before doing anything else.
So try not to worry. Hopefully you will get better very soon now that they know what is going on. Keep pushing fluids and get lots of rest. Take care
Posted 12/18/2013 3:31 AM (GMT 0)
I had c diff 3 times last year....no fun. Toxic megacolon is rare, and just a week of undiagnosed is ok, if that makes sense. Flagyl and vanco leave awful tastes in my mouth 24/7, so gum was my lifesaver. Take a probiotic and maybe your family too. My hubby and I only had the one bathroom each time, and he never got it. Wash your hands for like 2 min in hot soapy water a million times a day, especially after going to the bathroom.

Feel better!
✚ New Topic ✚ Reply