Will it ever stop hurting?

Hi All,

I have been in and out of the hospital pretty regularly in the last 4 years and i have to say i am getting pretty tired of it. I find that there is no help up here for people with the awful diease and people i work with do not understand what i go through. Sometimes i wonder if it worth it anymore.:depressed:

Welcome.

Sorry to hear you're struggling.

Everyone here, I'm sure, can relate.

Tell us a bit more (if you're up to it).

Well, it all started five years ago this past July when I had a heart attack, i had choose to ignore all of the pain that i was going through for a week but finally decided to go to the hospital and get it checked out. i thought that i had a really bad chest cold hell i was only 32 years old who thinks of a heart attack at that age.

Believe or not but i would rather go through that again then what i am going through now. After i got released from the hospital i was on a lot of medicine one of them being aspirin. I had started to feel a littel bit better and then started to get worse again but in a different way. My diarehha had been with me my whole life but this was different it was more frequent and very very painful. I went to the doc and told them the whole story and all they said was you a very large anal fissure. Let me tell you that hurt really bad. So they gave me some pain meds and sent me home, by this time i could no longer walk and the pain kept getting worse and worse. So i went back to the doc and told them the storu again. SO they scheduled me in for a colonoscopy. They found out that i may have coliltis and gave me salofalk. Three weeks later still can not walk and the pain has got even worse and now i have a huge painful abscess on my ass and i mean huge the size of a plum. So i went to the hospital to have it looked at and they said it was an abscess so they drained it. Get this they did not put me under or give me anything to help they just sliced away and boy did i scream. I have a pretty high tolerance for pain but i could not help it i had to scream even when i felt the abscess burst and drain it was so painful. The total size of the incision was 2 1/2 inches long and when i got home that same day it looked like i had three ass cheeks.

So at this point i was hoping that was it, then the worst of all pain came major bleeding and when i wouold go the washroom to shit, it would throw off the toilet it hurt so bad to have a movement. So back to the hospital i went again for am emergency colonoscopy. They later found out that i have severe crohns.

The heart was caused by the crohns which i never had checked out before, but it was the aspirin that got that ball rolling. It upset my stiomach so bad that it turned into this nightmare.

Over the next four years in and out of the hospital with abscesses and emergency colonsocopies and long stays at the hospitals. Sometimes i would have 3 to 5 anal fistuales at one given time, try and go to the washroom then, believe me it hurts really really bad. It really does want to throw you off the toilet when you have to go.

Potassium treatments, Imuran treatments, prednisone tratrments, MRI's etc and a couple of docs and i am finally on remicade but the pain it still there and i can not get rid of it. Then i got shingles because my imune system is so depleted i got a nice dose of shingles and that hurts as well.

To this date, abscesses and toilet paper issues it is taking its toll on me. Sorry for the storu being so long but i could have made it a lot longer, there was a whole lot other goodies in between all of this but i think you get the point.

Crohns = Nastyness!!!

welcome to the forum driving.

so sorry to hear about all your troubles, sounds like youve had it quite rough. ive also dealt with fistulas and abcesses, ugh never the size of a plum though. OWE. the pain from them before theyre drained is just about unbearable.

have you ever had a drain or seton placed in the abcess? i have 2 of each in my butt right now, and though theyre uncomfortable, they prevent the abcess from collecting. so then it cant turn into the giant plum nastyness.

i hope the remicade starts doing some good for your pain. good luck!

HI kello

i have had over 40+ abscesses and not one time had they ever mentioned any about a drain. in the last couple of years i ahve been doing the cutting myself instead of going to the hospital for a simple surgery. tell you one thing though i sure have a much higher tolerance for pain then before.

Thanks for welcoming me to the forum and i will mention the drain to the doc this thursday

Ray

Welcome to the forums driving. Sorry to hear that you have had to go through so much pain. I've not experienced the things you have so don't really have any advise but I'm sure others on here will post their support.

http://loudoun.nvcc.edu/vetonline/vet121/wound_images/drains.jpg

heres a pic of what the drains look like by themselves. kinda like ziti noodles lol. the surgeon just places it into the cavity and stiches it in place on the outside.

i find it strange that your doc hasnt mentioned something like this to you, but maybe its just a difference in our locations and how they do things.

agh i cant believe youve been having to drain the abcesses yourself! that sounds like pure hell. i do get where youre coming from with not wanting to go for surgery for every single one. sometimes my drians break the sitches and fall out, and i just shove back in for as long as theyll stay lol.

hope your appt on thursday goes well

With that many abscesses, I would be willing to bet you have Hidradenitis Suppurativa. A Dermatologist can diagnose this in about five minutes, but a GP will probably never diagnose it. No good official treatment for it, but some are using Turmeric to control it with some success.

Either way, it has to suck.

Dan

Hello Catfud, Pen, Kello82, Johnny, Dan,

Well that is a very interesting looking drain, it looks like a tape worm LOL. I will for sure be mentioning it to the doc the thursday.

Thanks all for the responses and i will try to mention the Hidradenitis Suppurativa to the doc but i do not think i will be able to say it, so i guess i will have to right it down for sure, i will also mention the tumeric as well.

Thanks everyone, please feel free to enlighten me with all of your conditions as well. You never know i just might have the perfect cure, since i have been around the hospital a lot lately.

Ray

drivinghercboy said:

Well that is a very interesting looking drain, it looks like a tape worm LOL.

Click to expand...

haha! well i much prefer the idea that there's pasta in my butt, rather than a worm :ylol2:

Well i guess that is it then....

The results are in from my last test and it looks very bad.....i have now have diabetes along with all of the other goodies.... Going for another MRI to see if i might have cancer in the ass.....

Sorry to say but i think that suicide might be the best medicine after all!!

:depressed:

Sorry to hear things aren't looking good, but hang in there!
I know it's hard to go through so much, as many of us here have, but
we've all gotta keep fighting! Feel free to vent as much as you need,
that's what this forum is here for! Let us know what the next test finds

You're scaring me with the s word too. YOU are worth it to keep fighting .
It sometimes takes a long time to figure out how to treat our conditions since everyone is so different, but you will find relief soon enough. If you are still in such pain, maybe you can try some alternative treatments. I was very close to trying accupuncture once, and I wouldn't rule it out if nothing else worked for me. Also, I know that my husband was referred to a pain management clinic for a slipped disk in his back. They may be able to help you more than you regular doc, that's what they specialize in.
Hang in there, and let us know how you are.

Thanks

Hi MBH,

Thanks for the support, yes it has been very very rough and i have to say that having my 10 year old son is keeping me in check with the big S. I have disappointed him many times over the last few years with daddy being sick or in the hospital, that is really very hard to handle. Not being able to go for bike rides at all as my ass is in constant state of pain:voodoo:

But i guess we can all agree on one thing that we all must try to be strong against this nasty disease.

Ray:smile:

I know what it feels like to seem like a disappointment to family.
My husband has to put up with a lot with me being sick all the time.
A 10 year old son, I can imagine, would have trouble understanding it.
But you set an extraordinary example of strength through your daily
fight with the disease- as we all do. Eventually, I'm sure he will see that!
And we're all here to support each other too on this forum!
keep up the good fight!

Well it looks....

Like it will be time to go back into the hospital for a little while, i have been in on average a month each time for the wonder visits.