Hi, I am desperate for advice. I spent much of the lat 18 months in hospital after a surgeon messed up a simple small bowel resection. After leaving holes throughout my bowel and 4 major surgeries later I am left with No large bowel, almost no rectum and too little small intestine. I now suffer daily excruciating, unbearable pain in my anal area (now also leading to the vagina as well) I pass 20 or more bowel motions a day and generally food comes out looking like it did when it went in. I now have a growing lump (scar tissue?) from my anus leading to vagina which burns with each bowel movement. I use numbing cream but it wont numb that lump and the lump is growing (its not cancer!) It often feels like i am also passing razor blades. Sometimes it is a different pain (always combined with burning) with either spasming when it feels like my intestine is protruding out of the anus or a feeling like something hard and sharp is stuck up that passage (sometimes i have to dig food out of there but sometimes it just feels like something is there pressing on nerves etc) I have had to cut all fibre, go 3 days a week or more without eating to get relief from pain and am generally in agony. The doctors have now given up saying they can do no more. Sometimes the pain is so bad I sit screaming on the toilet for hours. I want some kind of quality of life back. Can anyone please help?
Your problem is not very common, so it seems nobody is answereing you. I believe that you are having a very big problem, which I think would be difficult to completely treat, but nevertheless can be controlled. due to the fact that you large bowel and rectum hs been removed, you are having very frequent motions, and i assume these must be liquid, which don't hold in the bowel for much time. you must have excoriations around the anus , making more painful. I would suggest you take naturally available fibers like isopgul, eat bananas about 8-10 per day, which would hold water and make more solid feces. Have you taken loperamide tablets? I think you should try this, 2mg twice daily; but again it has its own side effects; if dose is high, it will leaad to life-thretening abdominal distension and constipation; you can start with 1mg once daily, and then increase till it suits you. Apply some soothening cream roudn the anus, containg xylocaine, and take hot sitz baths after motions. I hope this will ease you much better
Hi there
It sounds like you have a short gut, malabsorption syndrome and irritable bowel disease.
I've had similar problems after having surgery for T3 Rectal cancer and subsequent 4 bowel resections and ultra low anterior resection.( four resections all up leaving me with minimum small bowel, small rectum and half colon gone.
I've had four ileostomies and after reversal I've spent a year on the toilet with acid diarrhoea to the point I was passing frank blood.
The burning acid was killing me and the episodes were so painful and I'd scream but nobody would listen.
I was praying for my ileostomy back as life was better as u could get out of the house.
I had to do my own research and find out what would help me.
I'm now on a product called motion potion( alternative fibre supplement ) which forms a gel like stool that is easy to pass. It alkalises it to take away the burning.
You can take it numerous times a day and drink plenty of fluids and you won't look back.
It feeds the bowel and is great for all conditions like IBS, chroma, diverticulitis , constipation and diarrhoea.
Your diet needs to be low residue but contain soluble fibre, low in FODMAPS, Low fat, lactose free. Pea protein isolate protein powders
If you are going to have a fatty diet take cholestreme(questran) to soak up fat and also stop burning
Hope this helps as I was in such a bad way with no support from anyone
Also I get vitamin B 12 shots the part of my intestine has been removed
Codeine phosphate is also a good medication if you really can't slow it down but the more diarrhoea you have, the more motion potion you can take
It sounds like you have a short gut, malabsorption syndrome and irritable bowel disease.
I've had similar problems after having surgery for T3 Rectal cancer and subsequent 4 bowel resections and ultra low anterior resection.( four resections all up leaving me with minimum small bowel, small rectum and half colon gone.
I've had four ileostomies and after reversal I've spent a year on the toilet with acid diarrhoea to the point I was passing frank blood.
The burning acid was killing me and the episodes were so painful and I'd scream but nobody would listen.
I was praying for my ileostomy back as life was better as u could get out of the house.
I had to do my own research and find out what would help me.
I'm now on a product called motion potion( alternative fibre supplement ) which forms a gel like stool that is easy to pass. It alkalises it to take away the burning.
You can take it numerous times a day and drink plenty of fluids and you won't look back.
It feeds the bowel and is great for all conditions like IBS, chroma, diverticulitis , constipation and diarrhoea.
Your diet needs to be low residue but contain soluble fibre, low in FODMAPS, Low fat, lactose free. Pea protein isolate protein powders
If you are going to have a fatty diet take cholestreme(questran) to soak up fat and also stop burning
Hope this helps as I was in such a bad way with no support from anyone
Also I get vitamin B 12 shots the part of my intestine has been removed
Codeine phosphate is also a good medication if you really can't slow it down but the more diarrhoea you have, the more motion potion you can take
I read your post to my husband and he wanted me to reply. 2009 we were in a car accident and he spent almost 2 years in the hospital. He had 12 abdominal surgeries. He has no colon and 3 1/2 feet of small bowel. He does have his rectum. He has 10-12 bowel motions a day. He has the same burning and pain you have. He takes pain meds for this. His normal meds are Imodium 4 am and 3 pm each day, Prilosec for acid. He has found Carrington Moisture Barrier cream and Carrafoam (800-Medline) to be helpful. He also uses the lidocaine for numbing. He can not get out of the bath tub so he uses soap and hot clothes and hot showers. He wonders why there is nothing else to be done. You certainly have our sympathy. He drinks Gatorade G2 because it has less sugar. Sugar causes two much water in the bowel. He says drinking more does make everything smoother. Hope any of this might help you. God blees you every day.
Can't find Motion Potion?
Is it ok to take psyllium husk after surgery for bowel resection? I am having trouble with bowel movements (none for 2 days) and no much gas.
Burning rectum after 18" colon removal & resection. I've been good for two weeks, had regular bowel movement, and food digesting ok. But awful burning continually in & around the rectum. When will it stop?