Well, it all started just before Christmas last year. I was rushed to the hospital in an ambulance with a burst artery. I had lost approximately 3L of blood already, and they didn't know what the cause of this sudden burst was. I had my surgical team scratching their heads. In the end, they came up with two options: either 1: my internal staples had only just clipped it, or, long story short, I ended up with a lot of PV bleeding, or option 2: I had an infection that needed a way to get out, and because I have the ileostomy, they thought maybe it pushed through my vagina and caught the artery on the way. Well, within 24 hours, 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 myself against medical advice, and I have now lived to pay 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 discharge leaking out of my vagina and bottom. As I only had the rectal stump left, it didn't feel very nice, and especially when one night I had the urge to poo, and the next thing I know, I have this discharge coming out. He requested they perform an EUA (Examination under Anaesthetic) so they could know more about what's going on. Well, after the first one, they found nothing! So, I was then referred 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, etc., they needed, but to know that if they find the issue and it's 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 of May. I came home yesterday, 17th May, and I have never been in so much pain. Even with my first two ops, they didn't hurt this much, but I guess I could sit down with them. Now I can't. I have my cushion to sit on, but it doesn't help at all
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and to make it a lot better, it will be my birthday on Friday, 20th May. That's something for me to be happy over =) lol...
Please feel free to leave comments or if others have gone through similar issues...
Thanks, everyone.
Brooke.
Well, that's my story.
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. 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
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Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha
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:
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.
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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 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 I 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 than the plastic surgeon. Hang in there, and this too shall pass!
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
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Hi Sally,
Boy, did I need to read your post... I was feeling down and my surgery consult appointment is later this afternoon.
Ok, so 8 months later you're feeling good. How long after the rectal operation 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
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- but you know what I mean).
Can I expect to be laying around for weeks?
It is amazing how little information the doctors 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?
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I too had a fistula which, after 12 years and 9 failed surgeries, was finally repaired last September.
Instead of a Colo-Rectal surgeon, I found a Uro-gynecologist via the United Nations who has had a lot of experience dealing with fistulae in Africa where it affects women very badly after 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 much thicker and, fingers crossed, I have had no discharge or fecal 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
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Hey Wookie, it's been a long time. Unreal, I had the rectal stump taken out on May 1st, 2008. Yep, I hear you about the pain. I got an infection after my third day of being in the hospital and still have this icky stuff from the bum that is not a bum. Does that make any sense?!!!! Well, I was told people with Crohn's don't heal very well. I don't know if that's true.
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But three years on, still this discharge and cheap pads now and then, so the rectum that's closed but leaks. What the #$% is still giving 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 probably me feeling woozy from looking at the blood. What the
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..Next day, was told I had a bad reaction (to my own blood) type, so
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I just thought I would put my two bob's worth in. Good luck, darlz. My arse still feels the need to go to the loo. Strange life, this situation. xx Mooza
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Thank you everyone for your stories. I would never wish this pain or any pain upon anyone; it's excruciating even 8 days on, but that is because my wound site has become infected as well. I can't bend down or anything, and I can't separate my butt cheeks without it hurting, so I'm on loads of painkillers and a dose of antibiotics, and washing with salt and warm water.
Once again, I thank you for sharing your stories. If you ever want to chat, send me an email.
Thanks
Brooke =)
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!
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.
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Has anyone with fissures 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 primitive, and there are no settings or gauges. 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 fissure 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 not 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 decubitus ulcer into his tailbone (coccyx) that has been ongoing 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.