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My Story

Back, hate learning new forum software!

That said, here's my story.

I am 28 years old and in September 2012 I started experiencing extreme pain in one butt cheek - honestly I thought I had pulled a muscle badly, nothing more.
My parents rushed me down to emergency and I was told "you have an abscess, go home"... so we went home, not very happily either.

Two days later, I couldn't see properly because of the pain and we rushed back to emergency... 3 hours of waiting in the emergency room without even being glanced over by the duty nurse, we get to see a doctor. He took one look and said something along the lines of "oh shit" (secondhand from parents in there with me - I basically wasn't conscious by then)... I had Necrotising Fasciitis (feel free to Google, scare yourself silly) and basically one of my butt cheeks was a mass of black dead flesh... I was rushed into surgery and me mother was told to prepare for the worst as this normally had a 10% survival rate (what we didn't know at the time was I actually had a 3% survival chance because I had undiagnosed Crohn's Disease). They removed 80% of my left butt cheek and some muscle too.

The next morning I was rushed to the Royal Adelaide Hospital because the Lyell McEwen Hospital couldn't deal with all the bugs that had got into my system. I had... let's see, where'd that paperwork...proteus, enterococcus, E. Coli, streptococcus and "mixed anaerobes"... in other words, if I could get it I HAD it. They actually thought they would have to put me in the hyperbaric chamber just to kill the bugs I had at the time.

4 surgeries later to clean up the wound where my butt cheek had been. I was given a loop ileostomy to allow my wound to heal. I was then diagnosed with Crohn's Disease, but only it only affected the large Intestine. The whole issue was caused by a fistula to the perianal region. Turns out I also had other fistula going to other areas that had been 'missed' by my doctor previously. I was told that I had probably had CD for at least 10 years and it had not been even tested for by my doctors... great, advanced Crohn's Disease and the doctors are all trying to pass the buck...
So I woke up with this "thing" hanging off my front, in serious pain from the butt wound and the Damn nurses kept saying 'you have to get up and walk to the shower'... I couldn't even sit let alone walk! It actually took passing out after struggling off the bed for it to get through the nurses heads that I was not lazy, I was actually in a great deal of pain.

I cannot really remember the first two weeks in Royal Adelaide Hospital... I can remember the sadistic pleasure of passing out on the nurses though :) and I can remember each and every time they packed the wound - every morning. Absolutely nothing else. Apparently they put me on Infliximab (Remicade) during this time too.

So 2 weeks later they decided to try a negative pressure dressing (they had tried for one in surgery but it just didn't want to stick) and 1 stoma nurse was able to get the darn thing to work. Now THAT was painful! A negative pressure dressing puts a constant vacuum pressure on the wound site and in theory, promotes rapid regrowth of the missing cells... well what do you know, it worked! So that was being changed every 2/3 days - I would literally scream through the process each time they redid it. I wasn't capable of moving at all for about 12 hours after the dressing was done and then, ta da - I could walk around a little.

All this time my parent had been driving 2 hours down to the hospital daily and trying to get me to eat. I couldn't eat the hospital food, I was allergic to almost everything on the menu. I lost around 20kg (I think about 5kg of that was my butt) in 2/3 weeks. They started me on a nasal-gastric tube and night feeds... of course as soon as I woke up the nurses hassled me to get out of bed so they could make it so the sudden change of angle caused me to throw up everything that they had pumped into me in the last 12 hours! Idiots. That was when I put my foot down and stopped being an obedient patient for the nurses - they were going to do it MY way by God or I would have strips torn off them! Well what do ya know, I stopped throwing up the night feed on the day I told them to F-off and I would get out of bed when I was Damn well ready!

It took another 3/4 weeks but most of my butt cheek grew back. Fun part came about the 2nd week of negative pressure dressing time, a different stoma nurse did the dressing on a Friday afternoon (they then left the hospital at 4pm for the entire weekend) and she actually put the dressing OVER my anus (can anyone guess what happened???? Duh, everything that was left in my colon decided to come out and that completely stuffed the dressing up, soiled my wound and you guessed it the darn stoma nurses had gone home. The poor normal nurses had to call the offduty stoma nurses then remove all the dressing that had only been on for a couple of hours and then pack my wound again (making me immobile again) and wait until MONDAY for anyone to come fix the problem!

At this time I had been in for around 6 weeks and am on antidepressants and still in seriously bad mental shape... so now they teach me to look after the stoma - guess what? I'm allergic to adhesive so I react to ALL the bases they tried on me, it is still so itchy that I constantly have to fight the urge to rip it off to get some relief!... So my skin hasn't healed and touching the skin around the stoma made my eyes roll up into my head but I didn't lose consciousness... so they send me home without any information on stoma, what to expect, options for bags etc... yes I am still pissed off at them!

So home I went - 2 hours of sitting in a car on that still painful butt cheek! I think I slept for a week after that...

Fast forward and it's a couple of week later and time for yet another fun infusion. Now please understand, I have been on Prednisolone for a different condition since I was 13/14 years old, so I have "vanishing veins" and after being stuck daily (or sometimes several times a day) for blood I look like I have been beaten with a baseball bat, several times over. They had to get the head of the infusions department to find a vein because the trained staff couldn't even local one! They are at least happy with the progress of my infusions now, but I am extremely needle phobic.

For the past 3 months I have been trying to get someone to tell me when they were going to do the colonoscopy to check on the Crohn's and the healing of the fistula but all I got was "we'll see"... they didn't think I was having any problems with the stoma (skin still hasn't healed) because the stoma nurses were not passing the information on the the Irritable Bowel Disease Team. The stoma nurses also didn't bother to mention to me that I was developing a herniated bowel... so around 3 weeks ago I was rushed back to emergency at the Royal Adelaide Hospital and operated on. That fixed the Herniated bowel but the surgeon decided that I was sooooo very interesting that they wouldn't tell the IBD Team I was there until I became less interesting... So it turned out that the IBD Team would have done the colonoscopy and probably reversed the stoma, but Nooooo the surgeon didn't ever tell them I was there. So a week after being admitted to hospital, the IBD Team finds out that I have been admitted - found out completely by accident - and decides to take over my case. That meant I had to stay for another week just so they could run all their fun tests on top of the ones that the surgeon wants.

I got out of the hospital just a week ago. Now the IBD Team want me on a fun infusion for osteoporosis, which means removing all damaged teeth... 7 in fact, and they are all chewing teeth! BUT they don't want to give me dentures so that I can chew my food, so if that happens I will be living in the hospital and having a nasal-gastric tube permanently just so I don't starve.

To beat it all, my ileostomy is now only producing liquid and I am passing stools... and the hospital won't get back to me! Considering the darn ileostomy was put in to prevent me passing stools so that the fistula would have a chance to heal, you would thing they would at least be polite enough to ring me back instead of letting me freak out....

Ok rant over... and that's My Story.
 
I seriously think I'm going to have nightmares tonight after reading your story! I have never heard of such horrors! Makes the minor flare-up I'm currently having look like a day at the beach!
If you were well enough, I'd suggest that you come here to the U.S. and go to the Mayo Clinic. It's one of the best in the world. I have a cousin who's been there because of his Crohn's.
Bless your heart. I'm going to say a prayer for you and put you on my church's prayer list.

Current Medications:
Imuran 150 mg
Lialda 2.4 gm
Levbid .375 mg twice a day
Multivitamin
 
Thanks, my health is actually improving and there is no way that the doctors are going to let me anywhere near a plane with the number and variety of medications I am taking daily (current count 14 different types, 20 tablets daily plus 4 suppliments and they are thinking of increasing it too) heck customs would probably accuse me of drug smuggling. I think the Infliximab (Remicade) is actually working...

I just had to do things the hard way :rolleyes: I always do things the hard way... actually it meant that I was put on the Infliximab (Remicade) immediately, rather than having 5-10 years of fart arsing around with 'alternatives' that the doctor wanted to prove work - regardless of my health and well being (yes, the doctors over here still believe they are God :p )

I just wish that I could get a break... I've stopped saying 'I need a holiday" because ever time I say it I end up in hospital again :banghead: . I just don't get any time to recover between things going wrong and it's wearing me down. Emotionally I am a mess and I'm just wishing the IBD team would actually learn to call people back rather than let them stew for 2-3 days each time they have a problem.
 
I had to laugh at what you said about the officials thinking you're a drug smuggler. The last time I was hospitalized because of my Crohn's, I was on 25 pills a day. I had to keep a notepad with me to write down what I'd taken and when or I would've been completely confused. I'm glad you're doing better. Remicade really is a miracle drug. I'm going Wednesday to take my last infusion, and to see what my doctor wants to do next. I'm only in a minor flare right now.
It does get better once you get on the right medication. I know that's probably not comforting right now, but I recommend that you learn everything you can about it. I know from experience that doctors who are not GIS don't know enough about it. So I always encourage people to advocate for themselves.
Best of luck! I wish you good health very soon!
 
Thank you everyone for the well wishes. I know I am on the mend... my main problem is I'm not getting a break between things happening and it's plain old wearing me down.

But hopefully this week I can get some answers and get things going in the right direction again.
 
Well I have an update.... a good one for a change. I've been told my Crohn's is in complete remission and been put on the waiting list for a reversal of my ileostomy!

Only real complaint I have is that my meds make me soooooo tired, I'm sleeping 16-18 hours a day. Hopefully some of the suppliments I've been told to take will help with that though.
 
Wow, what an amazing story! You must feel like everything that can possibly happen has happened, but that is not true! But lets hope so. I am praying for your continued recovery.:):dance:
My sister has a similar story only hers is with feet ulcers inside ankles. She had then 13 yrs. and nothing would heal them. They never know what caused them. Every skingraft and med possible too. Now she is crippled from having to walk all crooked and on the front of her feet only. Just had left foot(bone removed) surgery May29th and the hole in her foot is now the size of a quarter. It was like a deck of cards to the bone. Your story just reminded me of her, with all you've gone through. Things you never could imagine, happen to the nicest peole! God bless you and may you stay in remission and thank the good Lord you are better!:)
 
Ok Here's another update...
I have my ileostomy reversal surgery on the 29th of August (fingers crossed), so only a few days more before I get rid of another 'paul' (no offense to the Paul's out there, just that none stick around in my life long - so that's the stoma's name.... worked didn't it?)

So I'm in complete remission and in about a month I would be able to start my HIIT routine again and drop some darn weight!
 
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