My Fun Story :/

[dwright85]

Hi everyone, im glad to have found a forum based on this illness. Will be good to see how you guys deal with the issues you have in hope I can apply them in my life.

Im 26 going on 27, and throughout my life I have been pretty healthy, I had no illnesses or allergic to anything. However 4 years ago, Mid December I began to get pain in my chest from swallowing food/liquids. The pain started to increase to the point all I could eat was plain white rice and water. Even that was painful. At first my physio told me it was referring pain from a back muscle, I went back and forward to this guy for a couple of weeks until he referred me to a chiro. The chiro did some xrays to see if I had anything swollen in the spinal area that could be giving me this pain, but no luck. Everything was normal. He told me to go see my GP.

Ive never really had a regular doctor, as I dont normally get sick. This doctor prescribed me with some heartburn releif.. Which didnt work, He then sent a referral for me to get a endoscopy done. 2 Months went by waiting for my appointment and I finally got the scope done. They found ulcers in my esophagus, they did numerous blood tests and bio's and had no real answer apart from it was "unusual" I was then given another endoscopy for more tests as well as a colonoscopy. which I woke up half way through both.. not fun, or a nice feeling.

By this time the ulcers had started to go away after this 3 Month episode, so no diagnosis was made 12 months later, in mid december again. Got the same pains from swallowing, and also lower stomach cramps when ever I needed to go to the bathroom or pass gas. I managed to get to see my specialist quite quickly this time so he could do more tests. After another round of colonoscopys and endoscopys I was diagnosed with crohn's. By the time the diagnosis was reached, I was getting better again. So no medication had been given. I was pretty much living off panadol to cope with the stomach cramps.

so 2 years went by and I had been healthy as.. altho I have found creamy/spicy/cheese based foods dont agree with my stomach and just cause me to bloat up.. but I just learnt to stay away.

so 2 Months ago, I start getting stomach cramps again, the same ones I had in my second outbreak.. Altho the pain is a bit greater this time, I tried contacting my specialist, however he no longer does bulk billing anymore, private health insurance only. I dont have hospital cover, so that means a 12 month wait if I wanted to use it. So basically I had to go to another GP to get a referral for someone else.. a month went by and I heard nothing. I contacted my GP and apparently the hospital never received the referral, even tho they had been posted it as well as faxed it twice. Hospital put me at the back of the list.

I noticed that night I passed a small amount of blood, so I went down to the Emergency Department where they kept me overnight and I had to do a stool sample and xrays and wot not.. doing this got me pushed through a bit quicker and I now have an appointment with a specialist next week. I have started to develop an internal hemorrhoid and a small external one, which I have been using a cream for, but so far its no good. This is the first time I have ever gotten one of these, and it sucks! Quite painful. So I have ulcers in my bowl and pain around the anus at the moment.

Only thing i can take at the moment for the pain is tramadol 50mg and codapane which has 30mg of codine in it.

So im still not able to take any propper medication for this until I see this specialist.. Im just worried by the time I get in and get this scope done I just suddenly become better and have to start all over again next time it flares up

 

[Jennifer]

Hi and welcome to the forum!

Chances are they'll look at your past test results and see that you had ulcers in your bowel and will also go by how often you flare along with their own tests and figure out a treatment plan that will work for you. I doubt you'll leave their office empty handed after all the testing is done. Keep us posted after your appointment and let us know what the plan is (testing and treatment wise).

Good for you for going to the ER when you saw blood. Going to the hospital really speeds up the process of getting in to see a specialist. Even though I'm already diagnosed I'd still go to the ER if I saw blood.

I've also dealt with referrals getting lost or overlooked or never even sent before (had a GP tell me he was going to send a referral but never actually did). Its frustrating and I hate wondering what's going on but at least they have a direct line to the woman who does the referrals and she tells me if/when they get sent and if she never saw it, she speaks to the doctor for me and makes it happen. Hope you wont have to deal with that again.

 

[David]

Greetings Thanks for joining and sharing your story.

The one specialize who sent you on your way because you were feeling better dropped the ball in my opinion. Crohn's isn't something that you only deal with when you're having problems. It's one of those diseases that you need to be as proactive as possible with. In my opinion, a shotgun approach is best for that. For example:

- Western Medicine - Whatever your doctor puts you on.
- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Research it. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.

I hope that helps a bit. Again, welcome!

 

[michaelearnest]

Talk to your doctor about Imuran - it has put me in the best stage of my life of 25 years of Crohns.

 

[723crossroads]

So sorry to hear what you are going thru!!! It's so strange how you can be well when they check you (COLONOSCOPY) and then a month down the line you have a flare up and it's like they don't believe you or want to give you any meds. Crohn's is a very frustrating disease to say the least. Just when I think I have it all under control, boom, the runs are back and cramps and headaches etc...
Just wanted to send my support your way and say hello and hope you get some help soon. Keep following what your body tells you. If something causes pain, stay away. Let us know what happens.
Come over to "Last One Wins" where you can meet some fun loving, nutty people who will make you laugh and keep you up!!! The way to win is just be the last to make a post and see how long it lasts and you win for that amount of time. But, it's the joking and carrying on that is the fun part. I'm hoping to see you there!!!!!