New and scared

[lburger69]

hello everyone, I am very happy to find this site and know i am not alone. My story started in my early 20's and has taking me 20 years to finally be diagnosed with colonites and Crohn's disease which I found out with a colonosopy and A CT scan(5 days ago). I have lost a lot of weight in that 20 years(30 lb's) and very depressed through the years. I used to surf contest and was a payed musician and had alot of freinds and my job, when i was working I baught property which helps with my morgage and kids, but all has been lost do to fatuige and pain and illnesses,so I spend most of my time in bed, I tried going to docters but was always misdiagnosed., one doctor told me I was fatuige because I had 3 kids and many many other doctors thought I was just looking for drugs, many emergency visits some said it was just internal hemroids so I gave up on doctors and started self medicating, mostly Opiates and Xanax, surfing was like heaven to me, It was my life and always took away my problems I had at the time away. my wife thought i was just out of pills and going through withdraws when i would have an episode so i was really frustrated and depressed that I could help her more and felt like a bad husband. I was in a living hell. i had a few episodes this last month or two so my father in law helped pay for half of my insurance. Now I found a doctor who surfs and our goal is to try and get be back out in the water, iwas in the hospital for a week and was on fluids and antibiodics. I am now on prednisone(20ml) 3 times a day and tapered down to two today ill take one tomorrow and i am going to the GI tomorrow, So Thats where im at at this point, I have few questions if its ok to ask, here they are
1, Will I ever get rid of my fatuige?
2, I have hot and cold sweats will that go away?
3. Is Crohn's an auto amune disease?
4, will my pain decrease?
5, Opiates and Xanax help and I have been taking them for years should I wait to taper down because the withdraws are terribal?
I have more questions but these are off the top of my head.
My wife now understands and I am so lucky to have her, and i love my kids and want to spend more time with then because you cant replace time.
Sorry my post is so unorganized i dont use the computer to much or post.
The posts I have read seem like there are a lot of caring people here and it helps just reading about your stories and I thank you very much for all the info. i could go on and this seems like its going to be hard and i hope i get better.
Thanks lburger69

 

[nativesith]

I am asking the same type of questions and felt the same. I felt until recently that strong painkillers were the only thing helping me. I had doctors tells me I am visiting them specifically to get high. I see others who receive these painkillers with lil or no pain signs like I have. It all makes me very angry. I too had family members getting on my case about it.
I have been undiagnosed for too long(over five years) with a pain that is constantly growing and changing form minor to major. I have two scopes on Dec 27 and prey they find what is the cause of all my life's pain and sadness. I too can not work or study. Losing everything and this Christmas is looking really bleak cuz of the money situation. I am not asking anyone for help. I am still a proud native man.
I seen better doctors lately who have been actually helping me feel better with medications like Ciprofloxacin,Metronidazole and others. Just trying to make it to the 27th the most pain free right now.
But I feel for ya. May the Creator save us from our pain and sadness bought on by this.

 

[lburger69]

hey Nativesith I feel the same way about doctors giving out pain meds for people who dont need them and people with real pain being denied something we need just to get out off bed and function, I really hope you find out whats causing your pain, every day is hard espesially when your are not diagnosed or found out whats causing the problem. I found out that you have to keep changing doctors till you find the right one and tell them your pain is a 9 or a 10 otherwise they dont listen, it had and has been the hardest life test anyone can go through, hang in bud I thought I was done with along time ago but aI had to take care of my familly that get me going, hang in there and just keep trying I sure things will come through for you, if they did for me it can for anyone else.

 

[nativesith]

I was in the ER last night and the doctor asked me how the pain felt on a scale of one to ten. I honestly felt like lying but I said the truth that is was four or five. Then he asked why I came ?! I told him cuz I may feel like a 4 er 5 now, but in a hour I am like a 7 er eight. Waking up from it a I feel like a 9 er 10, since most times I can not go back to sleep. He told me to come back if the pain gets to 8 er past it. Why would the amount of pain one feels matter when you feel it constantly? I feel like he did help me, but that question raised my eyebrow.
He gave me laxatives(which was kinda hard on me) and Buscopan. Feel less pain but a lot of gas and nauseousness now.

 

[lburger69]

I told them 10 and they did a cholonosopy and found full inflamation of my intestion and diagnosed me with clonites and Crohn's disease after a biopsy, good luck.

 

[nativesith]

I have been in the ER too many times for this. Like two visits before I saw a really good doctor who said right away this is Crohn's or ulcerative colitis. He gave me strong pain relief Metronidazole, and Ciprofloaxacin and he is the one who booked the scopes(colonoscopy and scope on Dec 27). Wish I found him long ago. I seen my family doc who was giving me nothing but pills that made it worse like Ibuprofen,Naproxen and Diovan (for my high blood pressure) and doin a million tests that proved nothing. He said this is not that bad and I should be working or doing something. I am fed up with him and I made appt with the good doc on Jan 4th.
It is looking a lil better.

 

[biancarose_b]

Hi. Don't know the answers to all your questions but I can definitely advise you on 2 of them. DEFFINITLY taper down the opiates slowly under advice from a doc. And crohn's has recently found to not be an auto immune disease, as was once believed, but is now thought to be an inflammatory bowel disease where the immune system plays a part in the problem. In regards to hot and cold sweats I can't say as not sure if ur on any other meds. I get hot flushes a lot, not sure if it is from my medication or not, but I have a desk fan at work and I go outside if the hot flush doesn't pass quickly. I don't know of anything else that works. Good luck.

 

[lburger69]

Thanks Bianca avery little thing helps, I'll let you know what other meds they are going to put me on, Im going to pharmacy today, Thanks.

 

[nativesith]

Well...I am off the opiates! Buscopan seems to be doing it's job. Still feel a lil pain and discomfort , but it is bearable.
Not taking diovan and less cramping and pain. Undiagnosed and untreated for soo long, one does what one has to. 5 days to go til the colonoscopy and scope!