Newbie, not yet diagnosed

[Rebecca85]

Hi, I'm Rebecca and I'm (almost) 25 years old, from England.

A few weeks ago I had a flu type virus that lasted for 2 weeks, and gave me the most horrendous sore throat I've ever had (worse than the time I had tonsillitis). When my throat was finally well enough to let me eat, I started puking up.
After a week of awful stomach aches and being sick, my boyfriend took me to the local hospital. They sent me to the city hospital as they thought it could be my appendix.

When I got there the surgeon said it was more likely to be my gallbladder, and I would have to stay in hospital while they arranged for an ultrasound. Unfortunately by this point it was Saturday, and getting a scan on the weekend could be tricky. My white blood cells were high, so they gave me antibiotics. I finally got the scan on Monday (after being starved for 3 days), they got the results on Tuesday. Apparantly there was nothing wrong, and I wasn't in pain so they discharged me.

4 days later, I am back in emergency. This time they agree something must be wrong. They do an adbo and chest Xray (which shows clear) and schedule a CT scan. I stay in hospital for a few days while I wait for the scan and results (actually I refuse to leave because I know I will just end up in emergency again). This time I do get the pains. They give me codeine, but it has no effect so they give me morphine. Finally I get some relief.

A doctor comes to talk to me about the CT results. "Have you ever heard of Crohn's disease?" he asked. "Nope" "Well we're referring you to a different ward".

On the new ward they try to get a colonoscopy done, but there are no free slots. Then one does come up, but it is too late to prep me. In the meantime they give me IV steroids, as the CT showed inflammation in my small intestine. That night I am in pain, but nothing like what it was before. After 2 days (pain free) on the IV they switch me to Prednisolone and send me home.

Seeing as I responded to the steroids, they are assuming that it is Crohn's, however I have to wait 2 weeks for a colonoscopy and biopsy before they are willing to say 100%. Meanwhile, I don't know what is happening, I haven't been told anything about Crohn's or what I need to do (other than I have given up smoking). I presume they are waiting for the colonoscopy before they arrange any follow up care for me?

Anyway sorry this turned out to be such a long introduction, I just feel so frustrated and it helps to get it off your chest.

Thanks,
Rebecca.

 

[ameslouise]

Welcome, Rebecca. I sure hope you get a diagnosis soon, but my amateur opinion agrees it sounds like Crohns.

You will find a lot of info on this site - info about drugs, symptoms, diet, etc. One thing to keep in mind is that Crohn's affects everyone in very different ways, as do the drugs. So don't be overwhelmed or discouraged by what you may read here. There are a lot of good success stories and people live good quality lives in spite of meds, surgeries, ostomies, etc.

Good luck! Lots of kind, knowledgable people here so ask any questions and you'll be sure to get answers.

-Amy

 

[Rebecca85]

Thanks for the support guys. I've just come back from spending my birthday at the seaside, and I'm feeling a lot more relaxed now (although I did overdo the food a little!) (and had a temporary relapse on the fags).

Wish me luck, I'm going back to work tomorrow for the first time in 6 weeks or so and I am actually looking forward to it, though I also feel nervous. Apart from anything else, I don't look ill. I lost a lot of weight at first, with the virus and then the pains, bit since going on the Pred I haven't been able to stop eating! Luckily I have had very few symptoms on Pred so should manage OK at work.

Oh, and I'm from Nottingham by the way.

Rebecca.

 

[Astra]

Hi Rebecca

sending lotsa luck to you, I went back last week after 4 months off, so know exactly how you feel!! Once there, I felt like I'd never been away!
xxx

 

[Nyx]

Welcome to the forum Rebecca! Prednisone is awesome and terrible all at the same time! What dosage are you on? Just as a heads up, take it as early in the morning as you possibly can or you may not be able to sleep at night. Unfortunately one of the side effects is insomnia....but it does make one feel almost normal again!

Good luck and keep us posted on how you get on

 

[Rebecca85]

At the moment I am on 25 mg of Pred, tapering 5 per week. I normally take it with breakfast and While I haven't been sleeping well, I suffer from insomnia sometimes anyway so it might not be the Pred. So far the only side effects I have noticed are the munchies and have been more emotional than normal (bursting into tears for no real reason, not anything serious like depression). But even that is settling down either as I get used to it or because of the lower dosage.

Rebecca.

 

[dreamintwilight]

Welcome to the forum, Rebecca I hope you get your diagnosis soon. Sounds like you are doing well on the Pred for now though. Happy to hear you are resuming somewhat normal aspects of life!

 

[Rebecca85]

Well, I had a lovely day at work today, everyone was pleased to see me and let me take it easy for a bit. And yes, it does feel like I was never away!

 

[Hedgehog]

Welcome Rebecca. I feel like the bionic woman on Pred. Except the bionic woman never had a moonface! :lol:
Hope you get answers soon. Have you had a look on the NAAC website in the meantime? The Crohn's Connect site is really good too. And of course the folk here are great for support and advice.
Gail

 

[Rebecca85]

Well, it's official. I just got back from the gp. The colonoscopy showed inflammation and perforate ulcers in the terminal ileum, and the biopsies have confirmed Crohn's. Luckily my colon is normal.

 

[Astra]

So you're a Crohnie? sorry about that, but at least now you know and can back to some 'normality'
you know your Pentasa? are you sure you're only on 3mg? I'm on 4000mg!!! each tablet is 500mg and I take 8 a day
besta luck Rebecca
xxx

 

[Rebecca85]

Not 3mg, 3g! It is the same as 3000mg. I take 2 tablets 3 times a day.

To be honest, I'm just glad to finally know. The waiting has been really hard- first waiting for the scope then for the results (the hospital forgot to forward the results to my gp so I've been waiting 3 weeks instead of 2).

 

[Regular Joe]

Hi Rebecca85,

Sounds like you had an ordeal like my first one some 7 years ago. It sounds like your small bowel got narrow - a "partial obstruction" probably caused by the inflammation and thickening.

Keep your heads up while tapering, and don't overdo the eating thing. The pred will often mask flaring symptoms, or keep them at bay. Now is probably a good time (while on Pred) to start considering adjusting your diet somewhat. Probably the best thing to get into the habit of is eating a bunch of "small meals" 6-8 times a day instead of 3 "normal-sized" meals.

I found the "small meal" concept to be an excellent way of curbing cramps, abdominal pain, and cutting the diarrhea trips down. When they say "small meal" think of something "the size of your fist" which includes protein and a carbohydrate. My girlfriend suggested a meal to me like this, and I realized I hadn't been wanting to listen to her, so I gave it a try.

Wow it worked, and kept my hunger away for many hours, as much as any regular sized meal. The meal was this: half-cup cottage cheese, a peeled apple sliced and diced into the cottage cheese, and 2 hard-cooked eggs. I could not believe how much staying power that meal had. I ate at 2:30 A.M. and even by 7:30 A.M. I still wasn't hungry. Note the times also correspond to my "insomnia" - Entocort keeps me wide awake.

There are some good Crohn's cuisene ideas online, and the main thing is to stay away from hi-fat content (greasy, fried, melted), high sugar content, high fiber/low digestability (nuts, popcorn), alcohol, and caffeine. There is no "set" diet because no two Crohn's patients seem to have identical "problem foods".

Good luck and welcome.

 

[Astra]

Not 3mg, 3g!

Oh ha ha
God, I can't even blame the Pred head anymore!!

 

[Rebecca85]

Thanks for the tips. I did wonder if I had a partial blockage because of the vomiting, but that stopped whenever I was given pain meds, so I think it was just a reaction to the pain. (I was the only person on my ward that stopped being sick when given morphine!)

So far I have been grazing throughout the day, and having a protein-y meal at lunch and dinner (maybe slightly bigger than a fist, I would say a child sized portion). I find I can be a bit more adventurous with foods earlier in the day, for example coffee is fine in the morning so long as I have it with food, but I avoid coffee in the evenings as it can give me a slight pain (and that is with the Pred, so I don't want to know what would happen once I'm off it). I have also been experimenting with meal replacement drinks for those times when my tummy is already sore, and they seem to stop it being aggravated further.

On a different note, I have bought my travel insurance (couldn't get cover till results were back) and can now start looking forward to my holiday!