Newly diagnosed, scared, financially worried

[xXVolatileXx]

I have spent a lot of my time reading posts on this forum over the past few weeks and have finally decided to post my own.
I am not entirely sure when my Crohn's began but I have had a sensitive stomachs for years. I remember weeks in university when I could eat nothing without immediately downing Tums or pepto after. More recently, beginning about six months ago, I noticed it getting worse. Practically everything I ate ended in diarrhoea or nausea. I figured it was due to a bad stomachs virus and flu I had suffered and tried the usual diet restrictions following illness to try and get my body back on track. When that didn't work, I started with the doctors. I got diagnosed with staff infection for my nose and mouth sores, then temporary lactose sensitivity, etc etc. However, nothing was getting better, in fact things seemed to get worse and worse. I started living on immodium to make it through every day and taking intense probiotics. I finally got to a doctor who sent me to a GI specialist and its been fast forward from there.

I was in the hospital for the first time for my first colonoscopy within a week of meeting my GI doctor. I had major panic attacks in the hospital but luckily the staff was very supportive. The doctor essentially took one look at my track and slapped me with a moderate/severe case of Crohn's disease. Yay!

Since then it has been a nightmare. I'm currently on prednisone and tapering off, just started on Imuran, tylonel3 for the nauseating pain and magic mouth wash, but have spent the last week in bed. I seem to have an intense sinus infection, mouth sores, crippling nausea and entire lack of appetite. Since I began tapering off of the prednisone, my symptoms have essentially returned to their former glory of bathroom trips every hour or so. I mean ok yes, before it was every twenty minutes, but an hour or two is still pretty frequent.

I am currently facing losing major hours at work due to my illness, and am in some serious financial troubles.
Overall, I'd say I'm ultra scared, ultra new to this and extremely ultra broke and welcome any support and advice available to me!!!

Thank you for listening future friends.

 

[Honey]

Hi there, and welcome,
So sorry you are having a difficult time. It must be hard having to worry about the finances of treatment when you are ill. We pay for ours through National Insurance taken from our salaries when we are working. It covers the cost to the N.H.S.
I t was some years before I was diagnosed with Crohns, then it took several meds before the right treatment was found for me. So I do empathise with you, it is an emotional rollercoaster, but you will get better!!!
I am currently on Infliximab infusions, in hospital every 8 weeks, and am doing well. Discuss your concerns with your Doctor and ask lots of questions about your treatment. I did and still do!! I was on Budesonide steroids for a long time which can reduce the inflammation. The latter causes all that pain.
It takes time to find the correct meds for you. Do not worry, use this forum to vent your feelings. It helps to share with other sufferers.
I do hope you feel better soon. Feel free to ask me any questions. Let me know how you are.
:welcome::hang:

 

[afidz]

Hello and welcome, sorry to hear you aren't feeling well
Prednisone is used to reduce inflammation quickly while you start on a long term med because those usually take a few weeks to a few months to actually start helping. Prednisone is also not suggested to be a long term med either because of the risk of dependency and potential harmful side effects of long term use. It is very common for symptoms to return as you taper off of prednisone. What dosage are you taking now?
One thing you can do is start a food diary. Keep track of what you eat and when you feel sick. Through process of elimination you will be able to tell which foods to avoid. However, if everything makes you sick, then a food diary is moot. Typically, stay away from things that are high in acid, fiber, nuts and seeds. Everyone is different, you may be able to eat things that other people can't and vice versa. Unfortunately, the only way to figure out what you can and can't handle is through trial and error, and error causing you pain and discomfort.
It is very important to keep your GI informed about your symptoms. Tell him all of the things that you are experiencing, even if you don't think it is related to Crohn's. Crohn's can effect almost every part of the body in one way or another, so if he knows whats going on, he can try to help you correct it.
Feel free to ask questions here, there are so many knowledgeable people on here from all over the world. But advice given is to be taken with a grain of salt and in the end, your doctors advice is the most important.
Hope you start to feel better soon!

 

[lizbeth]

Hello and a very warm welcome to the forum .

I'm so sorry that you have had to join us but im so very glad you did because now you are not alone. I have found the forum to be an absolute God send, with information and support from some very amazing people .

Following on from what Afidz said about food it would be worth your while having a look at low residue diet info on the forum wiki, and for a while at least do keep a diary of food and symptoms, it's also useful to have when talking to your Dr so that you can discuss how you have been since your last appointment.

I know right now everything seems very scared but it will get better, it will take time for the meds to work and then hopefully everything will improve. Sending you a big hug :ghug: take care and please feel free to ask us anything, or vent away, we're here to help.

 

[David]

Hi there and welcome to the community. I'm so sorry to hear what you're going through

To basically echo what others have said, I have to wonder what your next treatment is going to be. You obviously need to be on something besides the prednisone. Get in to see your doctor ASAP.

We're here for you.

 

[Ehohnadel]

I feel our pain. It's very hard for me and my husband to afford my tests and such. So I can only do so much before I have to just quit the testing and hope I feel better til I can afford another round. I hope you are able to get thru the financial side and get the help you deserved.