Officially Diagnosed

[Starla86]

This is my first post on here and after 2 years of pain and no answers, I now have one. I am 24 and was just diagnosed with Crohns. The dr said that I have major bleeding that has to be controlled ASAP. She put me on 1500mg of Flagyl a day and told me to stay away from fruits and veggies and fiber in general. My question is that 7 days into this regimen I have lost 5lbs which at this point I dont have to loose, I am 5'5" and 108lbs, and have developed a fever and cant keep food down so am living on a gatorade diet. I am more miserable now that I have been in a long time. Is this going to be the normal for me now? I go back to the dr in a week to see if this has stopped the bleeding and to talk about long term care. I am truly struggling with all this right now, between a very demanding job and an even more demanding two year old I would be truly appreciative of any advise or general knowledge of things to come for me. Thanks

Sarah

 

[CDDad]

Hi Sarah,
My first thought is that your doc is betting pretty heavy on Flagyl helping the bleeding. Of course, I'm not a doc, but depending on where the problem is, Mesalamine or Pred might be a better choice. Is your doc a GI specialist? I know some general docs (internists, family docs) will treat Crohn's.

Can you drink something with more calories, like a milkshake, or protein drink, instead of the gatoraid?

Here is a link to various drugs for Crohn's:
http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=treatments-and-drugs

You can read what they say about Flagyl.

 

[lorraine]

If you're able to get Ensure down, that can be very helpful in maintaining your weight. I dropped from 120 lbs to 108 lbs (and am 5'7") in the last 3 weeks, but have managed to hold steady at 108 for the last week or so, thanks to Ensure. I like the chocolate Ensure Plus best. It's 350 calories a bottle and has most of your needed nutrition. I'm not sure if Sam's or Costco carry the "Plus" kind, but the regular still has 250 calories/bottle and you can get a box of.. somewhere around 30 for $25. The 6 packs at the regular grocery stores run more like $8, so bulk is the way to go.

 

[ameslouise]

Hi Sarah, and welcome. Sorry about your dx but now you have some answers and can put together a treatment plan.

If you have a fever, then the Flagyl is indicated, but you need a blast of something else. I agree with Joe - a heavy blast of Pred would be good to control the bleeding IMO.

Ensure is a good option if you can tolerate it. If you still can't keep anything down, contact your doc sooner than later. You will really drop weight fast and you need your strength!

Good luck - keep us posted on what the doc says and what treatment plan you come up with!

- Amy

 

[Starla86]

Thanks for all the input. I am on the Flagyl for immediate relief and for the bleeding to stop, but at this point I dont see any improvement. I am suppose to talk long term care next monday, where steroids and shots are supposed to be mentioned. I am so nervous about steroids bc of their side effects. I have read that some people have major hallucinations that effect their everyday lives. I dont know if this is something that I can handle, my job is already on the line and God forbid that I start seeing things as well....SO are steroids a necessary evil?

 

[Astra]

Hi Starla
and welcome

I was on Pred last year for the first time, I was in hospital with an infection. I had never even heard of Prednisolone! It's how I found this forum when I Googled it!
Yeah, it is evil, but in it's defense, It saved my life and I avoided surgery.
Good side effects - I was euphoric, happy, manic cleaning, manic eating (much needed) very energised, wizzy, jittery and talkative!
Bad side effects - insomnia, chipmunk cheeks and weight gain round me belly
I never got depressed, anxious, nervous or had halucinations.
Whenever I felt jittery I kept reminding myself it's the Pred, not me, this too will pass!
After 5 months off work, I went back, still on Pred, and had no problems at all. In fact, I was dynamic! lol
And I could talk a glass eye to sleep!!
Give it a go, if you can't cope, come off it!
Lotsa luck
Joan xxx

 

[CDDad]

Don't fear the Pred. Sure, it has evil side effects, but it has an amost immediate action. In just a few days, you'll be feeling better. I gives you a huge appetite and you'll be eating everything that does not walk away. It also gives you a sense of well being, where you do not feel sick.

Ok, so the downside, all that eating will make you gain weight, and keep gaining. And the moonface, unwanted hair growth, bone loss (with long term use), mood issues, and the list goes on. But, in the short term, it can really help.

 

[SdN]

Starla I'm sorry to hear of your diagnosis but the good news is that the Doctors now know what's going on and you can now begin proper treatment for the disease. Hopefully this means things will get better for you and life will be easier. I was diagnosed with Inflammatory Bowel Disease (maybe Crohn's) about a year and a half ago so I'm still kind of in the beginning stages of dealing with it as well. I can sympathize with what you're most likely going through.

I would try not to worry too much about Prednisone as it may be what you need right now. It's not good to take long term but I've used it several times before and it has helped me immensely. For long term relief I have been on a combination of Imuran and Pentasa which your Doctor may also talk to you about (or similar medications).

One thing I hope you will consider when everyone is talking to you about these medicines that you may never have heard of before is that their benefits should outweigh any possible side effects and that they should hopefully make life easier for you and relieve some of the pain you've been going through.

 

[ameslouise]

Ahhhh, pred. We love to hate it and hate to love it. It affects everyone differently. Don't let it scare you - as Joan says, it can be a lifesaver!

-Amy

 

[Starla86]

Thank you all so much for your input. I went and got ensure plus and actually drank a whole one today...sad I know, but I was proud of myself. Trips to the bathroom slowed way down today, but the pain is still the same if not worse.
FYI
So my DR thinks that I have had crohns for about 12yrs but misdx. I started to loose alot of weight about 2months after I had my son(2008) but he was solely breastfed so they attriubuted it to that. I made 7 trips to the ER during his first year of life and when you have no insurance they tend to send you home with pain pills and a band aid. So flash forward and 81lbs lost later I got insurance. And magically 3 weeks later .. . welcome to the world of Crohns.
Im sure I will have a ton of questions and will be so thankful for input.