# Rectal Hyposensitivity - Journal



## Hybo (Jun 29, 2018)

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.


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## annie7 (Aug 16, 2002)

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.


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## Hybo (Jun 29, 2018)

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


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## annie7 (Aug 16, 2002)

"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.


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## Hybo (Jun 29, 2018)

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.


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## annie7 (Aug 16, 2002)

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


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## Hybo (Jun 29, 2018)

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.


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## annie7 (Aug 16, 2002)

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.


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## Hybo (Jun 29, 2018)

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


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## annie7 (Aug 16, 2002)

good luck!


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## Hybo (Jun 29, 2018)

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.


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## annie7 (Aug 16, 2002)

good luck with the botox. hope it helps.


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## Hybo (Jun 29, 2018)

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.


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## Hybo (Jun 29, 2018)

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


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## annie7 (Aug 16, 2002)

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


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## Hybo (Jun 29, 2018)

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


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## Hybo (Jun 29, 2018)

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.


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## annie7 (Aug 16, 2002)

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.


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## Hybo (Jun 29, 2018)

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


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## annie7 (Aug 16, 2002)

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


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## Hybo (Jun 29, 2018)

I have no idea but I have a new doc on nov 5th. im also logging and taking picture of when I do soil myself so that he cant say its in my head.


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## annie7 (Aug 16, 2002)

sure hope this doctor is better than your current one. good luck!


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## Hybo (Jun 29, 2018)

thanks annie. I hope so to. I am reading storys of people that have IBS D that shart all the time because of constant D. They get to use Imodium to solve it, which wouldnt do a damn thing for me


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## annie7 (Aug 16, 2002)

no, you're right--it wouldn't.


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## Hybo (Jun 29, 2018)

So I looked over my anal manometry test. And it was missing the part of how strong my anal muscle are. Called the doctor's office that did the test had them sent over. Come to find out my muscle are really weak (I thought I was just pooping myself because I still had Botox left in me. Bit that's not the case. I have been having a hard time getting to the tolit (most times soiling myself if I'm not right next to the toilet. Leaking and wet farting) but since the Botox has worn off I am still having issues. So hopefully new doctor can help me with this. I've already had been doing PT kegals and what not for the last 2 months. So idk where this will take me. Enemas are also not helping with the incontinence


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## annie7 (Aug 16, 2002)

so sorry you're still having issues.

that was a good idea to look over your anal manometry test and call the doc's office to get the missing part.

yes, i do hope your new doc can help you.

good luck.


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## Hybo (Jun 29, 2018)

Just gIt back from New doc. He said what's the point of putting me through hell. I will be getting a colostomy. I will continue to update this.


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## annie7 (Aug 16, 2002)

oh that's good to hear--that's what you wanted--right?

yes, do keep us updated.


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## Hybo (Jun 29, 2018)

Yes. Enemas daily laying on a floor and laxitives are not a kind of.life.to.live


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## annie7 (Aug 16, 2002)

i hear ya....


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## Hybo (Jun 29, 2018)

Started Sitz marker test today (hes allowing me to continue enemas since he only thinks the main issues are in the recal anus area).


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## annie7 (Aug 16, 2002)

he's allowing you to continue enemas during the test?? seems to me that using enemas would wash out the markers along with the stool and negate the test. all the instructions i've ever read re the sitz marker said no laxatives or enemas can be used during the test.


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## Hybo (Jun 29, 2018)

I guess he just wants to see the first half of colon. He knows 2nd half works fine besides my rectum because I was forcing stool out w no urge for 2 years.


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## Hybo (Jun 29, 2018)

Day 5 x-ray is tomorrow. Also Annie I have been reading a lot on the sitz test seems like most are now allowing enemas and mirlax to used during the test. I still think that this could mess with results. But I have never had constipation like ibs or what you had.


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## annie7 (Aug 16, 2002)

it all depends on what the doctor's purpose is for administering the test:

if the doc wants to see what your transit time is like while you're taking laxatives or enemas, then they want you to use them while taking the sitz test.

if the doc wants to see what your transit time is like when you don't use laxatives or enemas, then they tell you not to take them while taking the test.


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## Hybo (Jun 29, 2018)

All marks have passed (I knew they would) still have to get Another x-ray on Weds then Thurs colonoscopy.


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## Hybo (Jun 29, 2018)

Colonoscopy was clear. Have a meeting with stoma nurse and surgeon on the 20th of Dec.


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## annie7 (Aug 16, 2002)

thta's great, Hybo! you're on your way to a better quality of life.


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## Hybo (Jun 29, 2018)

Annie how often do you enema to get mucus out now?


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## annie7 (Aug 16, 2002)

i do it every other week. not fun. i wish i was one of those people who can just push the mucus out on my own but i have pelvic floor dysfunction, so i can't--i have to use a small, fleet size enema. and even then, i have to strain to get it out.


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## Hybo (Jun 29, 2018)

My fissure has healed (thank God). What I don't get is doctors are willing to give a colostomy for incontinence but not for RH. I almost feel lucky that I have a incontinence issue because living like this (laxitives or enemas daily) is just a twisted way to live. I am currently in some Facebook support groups were people have had rectal nerve damage (same as RH) that caused incontinence and their lives are going great.


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## Hybo (Jun 29, 2018)

Pre Op is on the 4th, then surgery is on the 11th. doctor is doing a loop so that I can enema from stoma to clear out mucus. To say the least I am nervous! excited. Hope-full, scared


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## annie7 (Aug 16, 2002)

good luck with your surgery! you're on your way to a better quality of life. keep us posted.


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## Hybo (Jun 29, 2018)

Well had the surgery (really wasn't bad) I can tell you already my life has improved. Even tho I'm taking pain meds colace is actually working. I am still in hospital but they plan on me being out tomorrow (so 4 days total). The doctor. Told my wife and mother when he was done "he now has his life back"


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## annie7 (Aug 16, 2002)

thanks for the update. so glad to hear your surgery went well. and yes, now you have your life back!


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## flossy (Dec 8, 2012)

Hybo said:


> Well had the surgery (really wasn't bad) I can tell you already my life has improved. Even tho I'm taking pain meds colace is actually working. I am still in hospital but they plan on me being out tomorrow (so 4 days total). The doctor. Told my wife and mother when he was done "he now has his life back"


Good to hear, Hybo! Keep us posted.


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## Hybo (Jun 29, 2018)

So it's been a few months sorry I haven't been posting. I have been able to get out and live again. Travel, eat, no more hours on the pewper. I will say that the bag may have it's in problems but I gladly will take them over what I was doing. Colostomy really is not that bad. I empty twice a day And change every other day (tho most people wait longer) No one should have to live a life of rectal hypo.


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## annie7 (Aug 16, 2002)

Hi Hypo

thanks so much for the update! i was wondering how you were doing.

so happy to hear that everything is going well for you. that's terrific!

i change every other day, too. of course, i'd like to be able to go longer but it's really not a problem and is a small price to pay for getting your life back, isn't it. no more misery and sitting on the toilet fighting with a rectum that forgot how to work years ago.

thanks again and take care!


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## Ricky_Freed (2 mo ago)

annie7 said:


> Hi Hypo
> 
> thanks so much for the update! i was wondering how you were doing.
> 
> ...


Hello Annie.
Have you agreed to a colostomy due to hyposensitivity and constipation? Do you have a permanent colostomy? Because you, as far as I know, had a megarectum, and if it was cured surgically, perhaps your problems would go away and you would only need a temporary stoma.
Do you currently have a permanent ileostomy? Let me ask you a question - why did you get an ileostomy and not a colostomy? After all, your problems were only in the rectal area, and the transit through the large intestine was normal?
A colostomy is more convenient, as far as I know, there is less frequent and more formed feces.
Thanks


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## annie7 (Aug 16, 2002)

i have a permanent ileostomy. i also had slow colonic transit. i did not have megarectum.


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