Crohn's Disease Forum » Your Story » My Story So Far


10-31-2011, 02:03 PM   #1
bobbycable
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My Story So Far

Hello all

i'm new here and thought i'd post my story, anyone who can shed any light on it please do so and sorry for the long post

i was diagnosed with crohns disease at the age of 14 (2003) i had practically hit rock bottom once i was finally diagnosed but recieved the best doctor and best treatment, after a few bouts with it with about a year or two gap inbetween each one it finally hit it's worse stage last year, i'd previously in 2009 went to see my doctor to get some medication as i could feel a flare up, the doctor said they wanted to check me with a camera and re-asses me during the camera i felt alot of pain which i wasn't sure of, later i ended up in A and E with stabbing pains, a junior doctor thought the xrays they done on my intestines showed a small rupture although 2 hours later the doctor who had performed the camera procedure on me stated she had looked at the xrays and it was a blemish not a rupture.

So after being sent home i got intouch with my new doctor after medication (again) and was told my blood results were fine and eventhough i had inflamation in my intestines noticed from the camera it would just blow over, about ten months later i thought i had the flu i had no energy and a pain in my back, after numerous hospital visits and a few weeks on a ward being given 24 tablets a day, arguing with surgeons and being passed ward to ward it turned out i didn't have flu my body was shutting down on me (hence being so tired and loosing about 4 stone) and the pain in my back was a abcess i went under surgery to remove it which would take away 1 foot of my intestines.

I later formed a fistula, went without food for 23 days to resolve this (i was told later the surgeon had went around this the wrong way) i was given a drip and somekind of formula working out at 2000 calories a day but it didn't help the hunger pains or seam to do much to the fistula and then massive hole in the front of me,

anyways upto today it's been about a year since my surgery and i'm becoming very lethargic my fatigue seams to have disappeared i have also noticed (just the past 2 days) muscle pains i have a appointment on thursday with my doctor (another new one as i wasn't happy with my treatment at the last hospital) and i am very concerned about a rash which has formed around and next to my scar, they are a small cluster of spots which is bothering me massively i have never had anything like this before with crohns disease although i do understand the sky is the limit with this condition.

Cheers

Bobby
10-31-2011, 04:26 PM   #2
bobbycable
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apologies for not using technical terms
10-31-2011, 10:03 PM   #3
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Bobby! I for one am glad you used Laymen's terms . I have had the run around also, even once told me it was all in my head! Kept getting mysterious stomach flues, and every time I moved I got sick. Had Diahreah quite a bit since I was 15 then when I was 32 the worst pain and had surgery they took out my appendix... long story short I went to another Gi specialist in Toronto after losing 40 lbs in one month the doctor knew right away. You are lucky you didnt get alot sicker, or a rupture. Sorry you had to go the long route. Crohns is very hard to diagnose.

You could have an infection around the incision, I would see your doctor as soon as possible. Hope you get better soon. Hope you join our motley crew!!
10-31-2011, 10:27 PM   #4
glum chump
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Hi bobbycable

Welcome to the forum! You've had quite the wild ride with a way too many doctors. That's terrible that your colonoscopy (camera) left you in so much pain and discomfort. The fistulas and abscesses are also so painful and cause so many other problems. I also had a doctor tell me that I had a fistula and they would have me stop eating and put me on TPN ('food' through the drip). I told my family doctor that I wouldn't do it, and thankfully, the second opinion I got said exactly what your other doctor told you---that it's not the right way to go about healing a fistula. I'm sorry you had to go through that...feeling hungry is an awful feeling.

With the fatigue you're feeling. Have you had your iron and Vitamin B12 levels checked? Are you taking Vitamin D? If you're seeing a doctor, I would ask to have a complete blood work done that would check everything, including your inflammatory and infection markers.

Don't worry about not using the technical terms---I was able to understand your story.

There are tons of people with a whole lot of knowledge and experience behind them in this forum...I'm sure you'll find lots of support and answers to things you're experiencing.

Good luck with your appointment on Thursday. I hope this doctor turns out to be more knowledgeable than the others.

Regards,

Kismet
11-01-2011, 06:23 AM   #5
bobbycable
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thanks for the replys guys and sorry to hear your storys

i'm going to put my technical term hat on now and try and talk some sense haha

TPN thats the name of it i couldn't remember, all i remember is a large back with a creamy coloured liquid which was put into a main artery in my neck and stitched in (kinda left a scar like a vampire bite (would have been good for halloween if i got dressed up this year aha)

after having the surgery and the fistula etc etc it was the last straw for me at said hospital i remember one night after being sent home (before they realised i had a abcess) i went back in and was put on a temp ward, in this ward a surgeon came to me and told me to go nil by mouth as i may be going in for surgery the next morning (basically they had alot of trainee doctors and as i was a younger patient i think they wanted to basically cut me open and show me off) BUT at this time i was on steroids perinsisolone i believe they were (i may be wrong i've been on that many medications over the past 8 years i've become to forget them) but as i'm sure everyone knows you can't go into surgery whilst on steroids as it will make your body think it is fine and not help in the healing process.

The main trouble i had was my surgeon wasn't my crohns doctor i have noticed that alt of crohns doctors do give you the time of day although if you get put with a surgeon who doesn't really think (like the one i had) they don't treat you like a crohns patient and more like a everyday run of the mill patient, this didn't help when i hit rock bottom and thought i wasn't going to get out of hospital, and the surgeon constantly kept me in the dark about everything i was very confused, i knew how to handle my CD but i had never had to go under the knife only a colonoscopy at the age of 14 and then again at 21 (the one which leaded up to the abcess)

I'm going to ask for a bloodcount to be done and as you said my B12 levels etc although as it's been a year and i had the CD infected area removed i'm hoping that this time they will not ask for a colonoscopy i'd rather a barium meal or MRI scan as much as i know they will probably knock me back i'm hoping i will never have to have a colonoscopy again.

and one last thing, has anyone ever had this? before i was sent home from that terrible hospital i had to have another mri scan to check how everything was doing, but as i was nil by mouth i couldn't drink the solution they use (caused my surgeon to argue with the mri nurse) i ended up having a ultrasound scan which to me felt abit of a joke, has anyone else had this? i felt like they thought i was pregnant or something, and i'm a guy! haha

Bobby
11-01-2011, 11:15 AM   #6
xJillx
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Hi Bobby and welcome! I am sorry your aren't feeling well only a year since your surgery. I hope your current symptoms aren't a sign of your Crohn's stirring up. Good luck with your appointment and keep us posted.
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
11-01-2011, 11:42 AM   #7
bobbycable
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i am actually feeling great today, it shows what a few days rest can do for you!

still going to get all my checks done either way, i'm a smoker and i understand this can be a problem in some cases, i've never noticed it effecting me eventhough the doctors swear it does :S

i'll keep you all posted and thank you
11-01-2011, 04:38 PM   #8
glum chump
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I've had several ultrasounds, mainly to see if they can see any abnormalities in the stomach, bowel and pelvis areas. Sometimes, ultrasounds are used to avoid a CT scan (CT scan uses radiation, and an ultrasound is less invasive). The ultrasound can pick up abscesses, cysts, excess fluid, etc. The radiologist can aspirate an area if something comes up during the ultrasound, and they can use the fluid that they aspirate to determine whether you have bacteria present. They also do ultrasounds for stuff involving bladder/kidney functions. Does any of this make sense?

I know that the first time I had an ultrasound, I was a bit taken aback (I'm not a guy, but i've never considered having a child, so I never thought I"d be getting an ultrasound!). But, it seems they're useful for a bunch of other things. I have to stop learning 'medicine' from tv shows!

As far as the smoking goes, everything I've read and the doctors have told me that smoking makes Crohn's worse. My personal experience has been that smoking made the Crohn's bearable on the very bad days (less pain, less cramping, less runs to the bathroom, etc.). Every time I quit, my symptoms would get worse. I lasted about three months, once, and then started smoking again and felt some relief.

Glad you're having a good day today. Let us know how the bloodwork pans out.

Kismet
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