[Hybo]

This is my story and journal of my rectal hypo-sensitivity -

Also have a anal fissure.

Dx'd with no sensation to have a bowel moment unless I have diarrhea or just before diarrhea - having 6 to 10 bowel moments a day.

First doctor - Stated that he could not help me, that I am the first case he has seen of this in 30 years. Told me that he would not help with the fissure because of having to use the bathroom so much.

He was stumped as to why the following doesnt work for me: suppository, enemas , certain drugs, kept asking me if miralax would work by its self advised does not work. went over the list of meds that didn't work for me. was surprised that some dont work. advised me to find another doctor. stated to me that a colostomy would not solve the problem (you mean it wouldn't by pass the rectum that isn't working? he had no answer for that.)

2nd doctor had never head of it - advised me to see another doctor.

 

[annie7]

i'm amazed that these doctors have never heard of RH. are these docs gastroenterologists?? did they look at your anal manometry results?

i'm also amazed that that first doc didn't understand that those meds didn' t work for you. my gastro docs understood perfectly.

and the colostomy part--of course that would help. you wouldn't have to use your rectum if you had a colostomy.

yes, do see another doctor. often gastro docs who work at a university hospital are more knowledgeable and proactive about treating constipation and rectal problems than other gastro docs.

 

[Hybo]

When I asked about a colostomy he stated "you could die" as point against it.

 

[annie7]

"you could die" ?????

that's ridiculous. i mean, sure, all surgery has some risk but a colostomy in and of itself will not cause death. find another doctor.

 

[Hybo]

Enema update - I have been trying them each day, its hard to get used to the fact that I am shoving something in my rectum daily. and sometimes its hard as hell to hold it in so that is going to take some getting used to but it is giving me freedom during the day, I am not constantly running to the loo like I do with medications. I am using a 1qt bag right now but will be getting a 2 qt soon. Eventually I plan on only doing this every other day but I want to make sure I get a good system down and that these are actually working (which they are I can feel stool coming out now). I was reading on what MS and people with spinal cord injuries do (they also lack the urge to pewp) and a lot of them do this same thing everyday or every other day.

 

[annie7]

that's great! so glad to hear that the enemas are working for you.

 

[Hybo]

so far so good on the enema end - I do notice if I let the water flow into to fast it gives me bad cramps. so I am letting water in via bursts (idk why these enema bags dont have a better method to slow water). it seems to create less cramping. I can deal with this over going to the bathroom 6 to 10 times a day.

 

[annie7]

i used to control the water flow with my fingers. i didn't use the clamp thingie that was provided in the enema kit. i just held the enema tube closed with my fingers and then opened them very slightly to let the water flow through slowly.

 

[Hybo]

I will try that next time. thanks for that advice!

 

[annie7]

good luck!

 

[Hybo]

My fissure seems to be getting worse not matter what I do. If I do laxitives I get bleeding and more pain. If I do enemas I get bleeding and pain. Doctor doesn't want to do lis because cutting that muscle could cause incontinence. So I'll try another Botox session but after that I may have no other choice but a colostomy route at least a temp one.

 

[annie7]

good luck with the botox. hope it helps.

 

[Hybo]

So I did some research about the daily enemas. I thought it was probably bad for me then I came across this http://coloncancersupport.colonclub.com/viewtopic.php?t=1623 so there is many people that have to do this same thing with no Ill effects.

 

[Hybo]

I've notice with RH I tend to have "wet farts" everyday is this common?

 

[annie7]

i don't know. i never had wet farts. maybe they are due to something else??

 

[Hybo]

i get them all the time [once or twice a day] and there is a lot of stool that sits in my rectum [liquid stools] that doesnt give me any kind of a urge, when I go to fart a ton comes out and I poop myself. the only thing I can see to control it is to not have liquid stools... but I cant do that. I hate RH so much

 

[Hybo]

Botox scheduled for Nov 7th. I have my doubts that it's going to work. My pain keeps increasing even with enemas. I am assuming it's because I have to leave the enemas in so long to get any good evacuation out thus it's diarrhea going over a open wound. Doctor stated that he wouldn't do lis surgery because of the risk of incontinence and the fact that I have to give myself D to have bowel moments. Is it bad that I dream of a colostomy, enemas are not fun. Laxitives are even worse.

 

[annie7]

good luck with botox. i do hope it helps you. so sorry for all your pain and misery. i wish you had a doc who understands what you are going through and who would help you.

 

[Hybo]

this was the last email from my doctor in reguards to my "wet farts" or soiling myself all the time.

"Unfortunately, not. Your symptoms and problems are very atypical especially having fissure pain with incontinence. In my 18 years of practice, I have never seen a patient with your constellation of symptoms and response to laxatives".

so someone that has to have constant diarrhea doesnt soil themselves when they fart? idk hes making me think its all in my head but my underwear and the diapers I am now wearing are saying otherwise.

idk if its because i am getting incomplete evacuations or what it is. but I cant strain it out... thats what caused the fissure to begin with

 

[annie7]

your doctor is not very compassionate, caring or empathetic. how would he like it if he had to live like you do.