Pain and Pressure at Backside

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sharon
Has anyone out there who has a permanent ileostomy and you get so much pressure and pain shooting up your rectum while just standing there where it literally makes you drop and brings tears to your eyes??

I have been getting these shooting pains once a week or once every two weeks. It puts me in a sweat and it only lasts from a moment to maybe three, but there is such pressure where I feel that something needs to evacuate, and sometimes some feces do come out! The family doctor doesn't know what to tell me! I was once told that I was stapled shut back there, so I don't know!
I am wondering if anyone else has experienced this before and what the cause is or is this something else we must live with!
Thank you for reading this post and please if you know of any answers, please let me know!
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Past Member

I have had an ileostomy for more than 30 years. Occasionally, I get phantom pains and dreams of defecating.
Sometimes, when I sneeze, it is still very painful.
But my rectum and anus are removed, and I'm very certainly stitched up back there.
If people have limbs amputated, they sometimes complain of phantom pains, so perhaps we are the same.
Anyway, good luck.

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tarababy
Hi Sharon, I too have had them. I am an ileostomate of 3 years, and let me tell you, having a baby has nothing on this pain. I got a cold a few months after and the coughing actually brought on the first one, so I put it down to too much pressure on things in the tummy maybe. Then when the second one hit, it felt like a ball of rock (a big one) was making its way through my intestines. This was making its way down to my Stanley, my stoma, then it felt like something really big was being forced out through Stanley. The bag, Billy, gave a burp, like it was a yummy dinner. Then the pain was gone. Well, there was buckets of sweat and no way could I have moved even. The only way I seem to be able to ease it is to rub my stomach or wherever it travels. And just grip something hard and breathe faster. I have never been told what it might be, but I have an inkling it's either a small blockage or wind. Good luck with it.
healthy

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

tarababy

Thanks for your comments, I'm not sure on Sharon's pain but I can guarantee this is no back pain...this pain is traveling...just because it seems to start somewhere back there!! LOL...it's not from a bad back...bad backside maybe...but hey, I haven't had them for a little while...keep fingers crossed...but I know what you mean, Sharon...let you know if I find out what it is...cya, seasons greetings to all.

 
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Butterfly
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 pray 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
Past Member
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 were apparently phantom pains (didn't feel very phantom lol)
Hope they ease soon x
lisam3

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

Past Member

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

lisam3

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.
tarababy

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 years on and I don't get it anymore... So I do think it was phantom pain... No doctor could tell me... Guess no doctor has one of these then... That's why they know so little... How can you if you never had one... Thanks... Good luck.

mjr2007

Hi, I don't know exactly how helpful this will be, but I have experienced the exact pains you're mentioning.

I am still only a temporary ileostomate. I was told that because mine is a loop ileo, it has something to do with the leftover feces leaking from the colon, and this builds up into stools.

Don't take this as a fact because it has not been proven yet.

Hope this helps a bit.

Past Member
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.
Past Member

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 occasionally 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 glycerine suppository and this usually clears all out and does the trick:

bamatex

I have an ileostomy and 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 though 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 and less frequently as time goes on. Good luck.

Whoa
Nurse
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 definitely 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, ileal anal 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 it 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.

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 check with your physician first (always the disclaimer!)

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 possibility of herniation in that area when the stump is removed; some surgeons will do a muscle 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 gastrointestinal physician is best equipped to help you in these matters, especially if the pain is persistent. Pain should never be ignored, even if the docs don't have the answers at the time...
sharon

Thanks, nurse.
I went to my surgeon and he prescribed me Proctofoam. It is heaven-sent! I have had that hardened bloody mucus with a very foul odor evacuate, a bit 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 (steroid) that is inserted into the anus. It is a steroid, so it is something you don't use on a daily basis and it is quite expensive, but it is the answer I and others like yourselves have been waiting for. At first, I was embarrassed 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 surgeon's 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 at least every two weeks or so, but I also make sure I don't run out either. It is so embarrassing 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 seem a heck of a lot longer than they really are! But if you guys are still getting them, do yourself a favor and ask your surgeon for some Proctofoam. Thanks for your help, guys, and I wish you luck too!

bevck41
Hi, is there anyone out there that can give me some advice regarding my rectal pain and pushing down feeling? I've had my ileostomy for 7 years 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 mornings 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. I'm at my wit's end with this, so please could I have some advice. Thank you.
groovyheaven
Hi Sharon,

I know you wrote this message a few years back, but I have been experiencing the same thing for about 2-3 years now. It used to last around 30 seconds and occur maybe once every 4-6 months, but in the last week or so, it has caused me so much pain I am in tears, sweating like anything, and doped up on painkillers. They are also lasting for 30-40 minutes and hurting me twice a day while aching between, now meaning I cannot go into college as lying on the floor screaming in agony is not the sort of thing you want your peers to see! I have been prescribed Buscopan by my doctor and I have taken my first dose this morning, so I am yet to see if it works. I hope it does :/ I hope your pain has subsided now,

Libby
Past Member
Hello, I have been experiencing sharp pain in the rectum, which is 5" long and in a loop. I have not tried a reversal and it's been 4 years and I am 69. No more surgery! Anything. I am taking Percocet x daily and Neurontin. I'm afraid 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 includes pain and pushing in the stoma. I've had a giant hernia repair and stoma revision. Even touching my rectal area gives pain. It's alive, the nerves are alive, and I think it has to move. Since the 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 "nerve damage." I accept that, but the meds aren't enough. I'm in fear of tearing something. So many people live a full life with this. Talk to me. Thanks.
Primeboy

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

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