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Couldn't take it any longer

Posted by wookie2005, on Wed May 18, 2011 9:18 am
Well it all started just before christmas last year i was rushed to hospital in an ambulance with a burst artery i had lost approx 3L of blood already and they didnt know what the cause of this sudden burst was?? i had my surgical team scratching there heads, in the end they came up with 2 options either 1: my internal staples has only just clipped it on well long story short i ened up with alot of PV bleeding, or option 2: i had an infection that needed a way to get out and because i have the ilieostomy they thought maybe it pushed through my vagina and caught the artery on the way, well within 24hrs the bleeding was no longer there and it was christmas eve i wanted to go home and spend it with my family so i released mysefl against medical advice and i have now lived the price for that.

Months on i had my outpatient appointment with my surgeon and i advised him on what i was now experiencing, and that was a disscharge leaking out of my vagina and bottom, as i only had the rectal stump left it didnt feel very nice and especially when i one night had the urge to poo and the next thing i know i have this disscharge coming out, he requested they perfrom an EUA (Examination under Anaesthetic) so they could know more of whats going on, well after the first one they found yep NOTHING! so i was the refered to see a gyno and she found something, ok well i am just rambling now so all in all my surgeon just said that it was easier to bring me in and do the tests ect they needed but to know that if they find the issue and its the infection, then i will need to be operated on again, and this time it will be my rectal stump with my bottom sewn shut. this surgery took place last Thursday the 12th may, i came home yesterday 17th May and i have never been in so much pain even with my first 2 ops they didnt hurt this much but i guess i could sit down with them, now i cant i have my cushion to sit on but it doesnt help at all Sad and to make it alot better it will be my birthday on Friday 20th may thats something for me to be happy over =) lol...

please feel free to leave comments or of others tht have gone through simlar issues...

thanks everyone.

Brooke.

well thats my story
Reply by beatrice, on Wed May 18, 2011 12:58 pm
Oh dear Brooke! What a time you've had . I'm so sorry for you - that's so much to go through.

Personally, I'm nervous to hear how painful the operation (rectal removal) was. I'm scheduled to have that done.

Wishing you a happy birthday and speedy recovery. Hope that 6 months down the road (or sooner) you can look back on this and sigh an know the issues are all done with.

all the best,
Beatrice
Reply by three, on Wed May 18, 2011 2:27 pm
Hi wookie 2005 ~ I have experienced pain, I know how it affects me, and I see what reactions it stirs in me — it shifts my priorities.

Although there is nothing I can do to help you with your pain, I want you to know that I feel a kinship with you, and with everyone who experiences pain.

And because I sometimes wonder how my pain threshold compares to other's, this news story caught my eye:
  
— BROCK LESNAR'S PAIN —

In his autobiography “Death Clutch,” mixed martial arts star Brock Lesnar describes his painful stay at a Brandon hospital after falling ill on a wilderness holiday in western Manitoba — the six-foot-three, 265-pound fighter was so sick, he had to be carried to the car by his brother.

At the hospital, Lesnar says he suffered because the hospital’s CT machine was broken, meaning doctors were unable to find out what was causing his stomach pain.

“I had no clue what was wrong. The doctor didn’t know either. He was waiting for a part for the CT machine. Time was slipping away, and I was wondering if I would ever make it out of that hospital alive. I put my faith in the doctors at that hospital. I shouldn’t have. It almost cost me my career. It almost cost me my life.”

After a weekend on morphine with no CT scan, Lesnar asked for more pain medication and he and wife drove across the border to a hospital in Bismarck, ND.

“I have a high threshold for pain, higher than most guys, and I couldn’t deal with it,” he says of the agony he felt during the four-hour ride. "It felt like I had taken a shotgun blast to the stomach, and then someone poured in some salt and Tabasco sauce, and stirred it all up with a nasty pitchfork.”

At the Bismarck hospital, Lesnar said he got a CT scan in 20 minutes and was diagnosed with diverticulitis, a digestive disorder.  He spent the next 11 days in hospital but escaped surgery and returned to fight in the UFC. His fighting career has been put on hold again, however, with the recent news that he is again suffering from diverticulitis.
Reply by SallyWillard, on Wed May 18, 2011 3:01 pm
I feel for you! I had my rectum and anus removed on September 14, 2010, my 40th birthday! Instead of partying in Mexico with my sister I was drinking an IV cocktail for surgery! It's now 8 months later and I am back on my butt again! No pain and no leaking!

About 5 years ago I also had the leaking coming from my vagina. The doctor did a colonoscopy and told me nothing was wrong, he couldn't see anything. Then he had the nerve to tell my then husband that it was all in my head and to seek psychiatric help. We drove to a different town 3 hours away and went to the ER at Cedars Sinai. They immediately took me in for surgery. My intestines had ruptured and were leaking feces through a fistula into my vagina. I ended up with a permanent ileostomy. And was feeling sorry for myself until the doctors told me that if I had waited even 2 more hours I wouldn't be here because I had become septic.

It will get better for you! And do your best to not sit until they tell you that you're ready. I delayed my recovery by sitting up too soon. A 6 week leave from work became a 14 week leave because I thought I knew more then the plastic surgeon. Hang in there and this too shall pass!
PJT
Reply by PJT, on Wed May 18, 2011 3:38 pm
Hey Wookie,

          It was a long time ago for me, but I had my colon and rectum removed in one operation. And yes, I do remember that my butt was pretty sore for a while. I had to sit on this donut shaped pillow for a few days. The good news is that it passes quickly and you will never have to deal with any of the issues you've been dealing with any more. Have a happy birthday and feel better!

PJT
Reply by beatrice, on Wed May 18, 2011 3:39 pm
Hi Sally,

Boy - did I need to read your post ... I was feeling down and my surgery consult appt is later this afternoon.

Ok - so 8 months later you're feeling good. How long after the rectal op was it before you were feeling 'pretty ok'. I lived most of my UC years feeling 'pretty ok' and that worked for me. So once I'm at that point, I know I'll be able to handle it (like we have a choice - but you know what I mean).

Can I expect to be laying around for weeks?

It is amazing how little info the docs are ready to give -- even to answer very specific questions.

Many thanks,
Bea who is not leaving the office until she feels her questions are answered ... did you bring a sleeping bag to the office, doc?
Reply by lottagelady, on Wed May 18, 2011 7:24 pm
I too had a fistula which after 12 years and 9 faileed surgeries was finally repaired last September ....

Instead of a Colo-Rectal surgeon - I found a Uro-gynaecologist via the United Nations who has had a lot of experience in dealing with fistulae in Africa where it affects the women very badly after bad traumatic births.  The difference is that she was interested in my WHOLE pelvic floor, not just the rectal end and has built up the wall between my rectum and vagina so that it is so much thicker and fingers crossed, I have had no discharge or faecal leakage since that day in September when she operated on me and fixed it in less than an hour ...

Hope yours doesn't take 12 years and how they didn't know what it was amazes me ....!

Message me if you'd like hun ... take care

Rach xxxx
Reply by mooza, on Thu May 19, 2011 11:23 am
hey wookie been a long time ..unreal i had the rectal stump taken out May 1st 2008 yep i hear ya pain i got an infection after my 3rd day of being in hospital and still have this icky stuff from the bum that is not a bum make any sence !!!!! Well i was told people with crohns dont heal very well i dont know if thats true butt 3 years on still this discharge and el cheapo pads now and then so the rectum thats closed but leaks  wat the #$% is still givin me grief i did end up with my first blood transfusion in the hospital which was a shock but i felt even worse but again was told prob me feeling woozy from looking at the blood Wat The ..Next day was told i had a bad reaction ( to my own blood ) type so i just thought i would put my 2 bobs worth in ..Good luck darlz my arse still feels the need to go to the loo .....Strange life this situation xx mooza
Reply by wookie2005, on Fri May 20, 2011 5:27 am
Thank you everyone for your storys, i would never wish this pain or any pain upon anymore its excruciating even 8 days on, but that is because my wound site has become infected as well, i cant bend down or anything and i cant separate my butt cheaks without it hurting, so im on loads of pain killers and a dose of antibiotics, and washing with salt and warm water.

once again i thank you for sharing your storys. if you even want to chat send me an email..

thanks

brooke =)
Reply by beatrice, on Sat May 21, 2011 1:21 pm
Oh Mooza! If I still have discharge, pain and problems after having my rectal stump removed (this year sometime) I think I'm gonna jump off a bridge !

I've had 'bum problems' with my UC since I was 8 ... time for the Barbie Butt to work perfectly, don't you think? The Ileo is working fine.

Hope you're feeling better as the days go on, Wookie.
Reply by Joymarla, on Mon May 23, 2011 4:03 pm
Has anyone with fisures and infections heard of or thought of using ozone to heal?  It has been miraculous in my husband's healing process at different times.  My machine is old.........perhaps 13 years and very basic or perhaps primative and there are no settings or guages.  Just off and on so it is not scientific.  I just turn it on and place the hose end near the offending issue, cover the area with a plastic bowl appropriate to size and then cover with a few pads & towels and let the ozone run for thirty minutes or so.  I feel that he would not be alive without the use of ozone during more than one of his major issues.  I now use it at the very sign of redness or soreness.  It has not failed yet and would work even better if he were brave enough to allow anal infusion as his present fisure is internal where they perforated his rectum during surgery in 2010.  For this,  when it flares up, I am  just putting the hose near the rectum, covering him well and letting it run for thirty minutes to an hour.  We so far have escaped the ER with ozone and ten days of Septra this time.  Just after his second round with the ostomy when they perforated him, he had a bleeding sore that appeared to be four or five layers of skin deep under the wafer, one treatment made it good as new.  I am a believer! I sorely regret that I did think of ozone sooner before it got as bad as it did. I feel so bad for all of you going through this and wish with all my heart that I had considered the ozone sooner before his infection and subsequent radiation damage caused him so much trauma.  Sometimes, when you get desperate enough, you just have to get brave and strike out on your own when the doctors fail to listen or help.  They are very good at intimidating you into submission.  

I found a very inexpensive ozone machine on Amazon last month for around $65.  I purchased one for us and one for my cousin whose husband is paralyzed and has a decubitas ulcer into his tail bone (coccyx) that has been onging for a very long time. She is being very cautious as it is two inches deep and she does not want to heal the outside without healing it at the internal source.  If anyone has input, we would be grateful to hear from you.

My heart goes out to all of you and I pray that we all are through most of the rough times.
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