Experiencing Severe Pain and Pressure with an Ileostomy

Back pain comes in two forms, acute and chronic like Acute pain comes on suddenly and intensely and Chronic pain is recurring. back pain is preventable so don't be worried. For most people, drugs work well to control pain and discomfort. But any medication can have side effects.

Thanks for ur comments , im not sure on Sharons pain but i can gaurantee this is no back pain...this pain is travelling....just because it seems to start somewhere back there!!lol...its not from a bad back...bad backside maybe..but hey i havent had them for a little while ..keep fingers crossed...but i know what u mean sharon..let u know if i find out what it is..cya  seasons greetings to all

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Hi Sharon.....yes, yes...yes.

I know exactly what you mean. Sorry you have experienced this but thank goodness I'm not the only person on this planet who has experienced it.

The pain shoots up my redundant rectum like something demented.

Then I have felt like I was going to lay an Elephant. No chance of that as after my permanent Ileostomy I was all sewn up there.

My Doctor was no help at all so I just prey it doesn't happen too often.

I'm sorry I haven't any answer.

It's a while since you posted this message.....is it still happening to you?

I do hope not.

Butterfly

Hi Sharon



Do you mean after proctectomy? i used to get these pains when i had my temp ileostomy and i had them for about 6 months after my proctectomy which where apparentky phantom pains (didnt feel very phantom lol)

Hope they ease soon x

Just to let you know that I too get that pain up the back side.  It is the worst pain of all.  I have suppositories that I use, but the pain comes on so quick that it is too late to use them.  I don't know exactly what causes this.  I have a rectal shute and that is where it is stapled closed.  If you find a solution please let me know.  Thank you.

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sharon,

I get that too every once in a while. I think it is a spasm of some sort in the colon.

Mercutio: I don't have any colon left.  I have an ileostomy.  That means that all the colon has been removed.  Still have the rectum though.  The pain is just horrific.  Doesn't last long but while it is happening it takes you to the floor.  I don't believe it is phantom pain either.  It has something to do with where the surgeon cut the colon from the rectum.

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hi there, i am an ileostomate with my colon still.I also experienced that pain in the early stages of getting this nightmare...Now almost 4 yrs on and i dont get it any more...So i do think it was phantom pain....no doctor could tell me..Guess no doctor has one of these then..thats why they know so little..How can u if u never had one...thanks..good luck

hi i dont no exactly how helpful this wil be but i have experienced the exact pains your mentionin.



i am still only a temp ileostomate, i was told that because mine is a loop ileo it has something to do wiv the left-over feaces leaking from the colon and this builds up into stooles.



dont take this as a fact because it has not been proved yet.



hope this helps a bit.

Sharon,



I have an ileostomy for 29 years. I can assure you that I know exactly what you mean by that rectal pain. It is very disconcerting. It appears from out of the blue and can last for a variable amount of time. I really don't know what the cause is. (I have some theories, but I won't bore you with them). The lower abdominal pain that originates from the lower back and radiates to the front and can last for a considerable amount of time could be the result of a bolus cramp. What happens here is that you have eaten too much roughage such as raw carrots, peanuts and things like that. Usually, you just have to wait this out. I have had some really bad ones over the years. Be careful with your food combos.

Hi, I still have most of my colon but have experienced a similar pain quite often. I was originally told that as I still had my rectum that I would occassionally feel the need to pass some mucus. However a few weeks after my surgery there was still no sign of mucus and the pain and pressure in my lower back and rectum area was severe. I decided to irrigate my back passage and I passed several very large stone like lumps. I have quite a bit of medical training and the only thing I can imagine is that these were lumps of hardened mucus. The relief was immediate. The pain and the pressure will start to build up again usually once a week or so. When it happens now I use a gylcerine supository and this usually clears all out and does the trick  :

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I have an ileostomy & still have my stapled shut rectum. When I was still experiencing bad pains there after my surgery I consulted my surgeon. He told me that, even tho I'd had my colon removed I still had some UC in my rectum. That may be what's causing your pain. If you're like me it will occur less & less frequently as time goes on. Good luck.

If the rectal stump is left, it is still alive and acts like a colon, meaning, it produces mucus.   The further away from the rectum your stoma is located, the more mucus it usually produces.   The mucus can vary from runny liquid to hard balls which definetly can cause pain if not expelled.



  Story:   Many years ago when I was a NEW ostomy nurse  and ileal anal pouches procedures were still pretty new,  I had a home care patient that had his colon removed, ilealanal pouch created but temporary ileostomy until the pouch healed.  Technically all stool should be coming from his ileostomy stoma.  He swore  up and down on the phone he was passing stools from his rectum, told him was impossible . Well, he saved them, showed them to me,sure enough they looked like stools but were mucus balls!  Live and learn!  I told him to take them for show and tell to his surgeon  

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  Glycerin suppository is a good suggestion, or irrigating the stump with low volume saline or water may help (10 cc or so at a time).  Be careful and gentle; you may want to checkwith your physician first (always the disclaimer!)

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I've had ostomates complain of rectal area pressure type pain even with the rectum removed.  All the books say it should settle down as the organs readjust their position in the body cavity.  There is a possiblity of herniation in that area when the stump is removed; some surgeons will do a muslce flap there for prevention and support.  Personally I have also wondered if phantom pain was possible...old habits die hard as they say!



Your surgeon or gastro intestinal physician is best equipped to help you in these matters, especially if the pain is persistant.  Pain should never be ignored, even if the docs don't have the answers at the time.....

Thanks nurse.
I went to my surgeon and he perscribed me proctofoam, it is heavens send! I have had that hardened bloody mucus with a very foul odor evacuate, abit like giving birth.He called it proctitis still UC in the stomp.ASk for some and you will not regret it!It is a foam (steriod) that is inserted into the anus.It is a steriod so it is something you don't use on a daily basis and it is quite expensive but is is the answer I and others like yourselves have been waiting for.At fist I was embarressed to ask the doctors because the family doctor was the first one I asked and he stated it must be phantom pains,but OH NO I knew they couldn't be.I was in my surgeons office talking to him about my recovery from my ostomy revision a month prior and he was examining me on his bed and I jumped up from the rectal pain and I was just A SWEATING and grunting my teeth, moaning,he sent me right away for a scope there I was diagnosed with proctitis,he put me on this drug and this is what you call a wonder drug! Don't get me wrong I still get them from time to time but I use this stuff atleast every two weeks or so, but I also mak sure I don't run out either.It is so embarressing when you're at work working with the public or just out in public and there is no warning whatsoever,you get doubled over and can't help but to drop to your knees,those few minutes seema heck of alot longer than they really are!But if you guys are still getting them do yourself a favour and ask your surgeon for some proctafoam,thanks for your help guys and i wish you luck too!

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hi is there anyone out there that can give me some advice regarding my rectal pain and pushing down feeling??? ive had my ileostomy for 7yrs and recently had surgery for a parastomal hernia and a re-fashioning of my stoma. Since then i have constant pain and a heavy pushing feeling, but mostly in the morning's and when i go to bed. i have tried suppositories and other things but to no avail. i have tried to sit on the loo and push but that makes it even worse?? im at my wit's end with this, so pls could i have some advice. thankyou.

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Hello, I have been experiencing shar pain in rectom of which is5" long and in a loop.  I have not tried a resersal ad it's been 4 years

and I am 69.No more surgery !!! anthing.  I am taking percoset. x daily and neurontin. I'm afrais to do much and last year I played some tennis. Now I feel like I'm ripping when  I can't sit or lay down.  the pain goes right through and includespain and pushing in stoma.  I've had a giant hernia repair and  stoma resivion. Even touching my rectal area gives pain.  it's alive, the nerves are alive and it think it have to move. Since last stoma repair it has made things worse. The first 2 surgeries were by a famous NY surgeon and I paid BIG .  Guess I'm just a lousy healer.  Not ready to call it a day.They say "nerveamage. I accept that but the meds aren't enough.  I'm infear of tearig something. So many people live a full life with this.. Talk to me. Thaks

Sounds like you need a second opinion, Bug. Have you been to Mt. Sinai? A daily diet of Perc is NG as far as I am concerned. You should be able to have an active, full life. I am almost 69 and opted against the reversal since I have had enough surgeries already. There's nothing I cannot do anymore except dance at Chippendales. Don't guess anymore. Find a trustworthy doctor and let fear strike out.   PB