Pressure on Bottom After Ostomy Surgery

Good afternoon,

I have had IBS-C my whole life and at 47, it finally took its toll on my colon and had a full open colectomy in July of 2015. But I did not have an ostomy bag after that surgery. After that, things still weren't working right. It was discovered that the rectum was damaged as well, so in November, I had my loop ileostomy surgery. I have done much research (a lot of it on this site) and have found it very helpful in trying to adjust to such a huge life change. At the beginning of January, this terrible pressure on my bottom started and is so uncomfortable I can hardly stand it. I feel like my insides want to come out of my butt. Of course, I saw the surgeon, had a proctoscope exam, lab work, and a CT scan, all of which came back as "normal". I am working so hard to have a positive attitude about this whole process, but now I feel I have been through all this and I am still in pain and scared this will never end. I am wondering if anyone has experienced this same problem after this surgery because in all my research, I have not seen anything on this feeling of pressure happening after the surgery. Any input would be appreciated.

October Born

The rectum normally produces mucus to assist in the passing of stools. This continues after colectomy and can build up if not released. Sit on the toilet like you used to, do not strain, just wait. That will make you feel better already. Eventually, stuff will come out of your bottom. Do not panic - it's just clearing your residual rubbish. After that, you will pass clear mucus, maybe often, maybe rarely. Everyone is different.

Take care

Well, hi there.

I can tell you that you aren't alone. It is a really unusual feeling, to say the least. I have had my ileostomy and my rectum removed, maybe 15 years if not more. I must tell you, I still have this weird feeling from time to time, but you get used to it. It is hard to explain to anyone because they think you are nuts, but I totally understand what you are saying. Be assured that nothing will fall out and the sensation will go away after a while, but it does return from time to time, but not as strong. You are totally normal, don't worry.

Best regards,

Nick

PS. The punctuation on this is all screwy because the iPad doesn't allow you to see what you are typing. Really dumb. Sorry.

Thank you Ladygunner. I have been trying to convince doctors that my problems weren't my IBS acting up since September of 2014, so it's been a long road to relief. I appreciate your assistance in the process to feeling halfway decent again.

Please do not apologize for punctuation, Nick. You have been very helpful, so you could have skipped it altogether, and I would still be very grateful for your comments. You have managed to make me feel better, not in body but in mind, which is pretty impressive these days.

Darlene

Words of Encouragement from Ostomy Advocates I Hollister

I got a colostomy bag in 2012. I had radiation and chemo for anus cancer. Months afterwards, I had trouble having bowel movements. The radiation scarred my rectum so much that the muscles down there would not work. I was in the ER weekly in severe pain. I had so many enemas and still had trouble passing stool. FINALLY, they suggested the bag. It was the best thing that ever could happen. I still have pressure down there, and I just sit on the toilet, not bearing down, and the mucus passes. The mucus builds up every 3 months or so. It wasn't the cancer that made me have the colostomy, but the RADIATION and CHEMO!!! I am just happy I got relief getting the bag!!

Hi, Alistair here.

After surgery, I had terrible pain and pressure that sounds like the same thing you are experiencing. I also had a CT scan, etc., and the tests showed nothing. I was prescribed pain medication that really didn't work. Nothing worked for the pain except time. It took about 11 months before the pain was gone, but the pressure still occurs on a regular basis. I just pretend to let it go through its course in my mind, and eventually it goes away. I wish I could tell you it's gone in a couple of months, and I hope yours is. I also thought I'd have to live with the pain for the rest of my life, but now I'm happy it's gone, and I'm sure one day soon you'll be saying the same.

Hello October Born.  Just a short note to add to those who have already replied. For about a year after my operation I had terrible abdominal pains and that peculiar sensation that you describe,  also horrid multi-coloured mucus lumps that would come out a bit like faeces. The doctors said it was 'normal' but it stunk, so I flushed it out regularly just so that it was clear rather than smelly gunk. I should add here that prior to my stoma I always had to flush out my anal area regularly so having to do it post-op was no big deal.

After about 18 months it seemed to be continuously clear without my flushing intervention and the pain subsided. However, every now and then the pain returns but not nearly so intense as it was in the beginning.  

I kept telling myself that even at its worst it was still not as bad as before I had a stoma so now I just accept it for what it is and hope that it clears up as quickly as it comes. Which it usually does if I can distract myself to thinking about other things. I have found that once I start focussing on a pain it seems to exaggerate its effects until my focus goes onto something else then it makes me wonder if the problem lies in my head rather than my body!

I hope your problem clears up soon and you can get back to a relatively normal life.

Best wishes

Bill

Walderpeee, I am just so happy you are a survivor of such a horrible disease. I know far too many who haven't been. May God bless you and keep you cancer-free. Thanks for the info.

Thank you, Bill. I find I have that same mind-body connection, so your advice is much appreciated. I do need to remember that life is less painful now than before the ileostomy. This discomfort is nothing compared to a lifetime of severe constipation and pain. Thanks again.

Hi Alistair, my surgeon wants to send me to a pain management doctor which I would prefer not to do as I don't care to take pain meds unless absolutely necessary, also I have found sometimes they can actually make things worse. That's why I came to this site to research this issue and have gotten wonderful advice from not only you but many generous people. Thank you for taking the time to help me out.

Hi there,

Your post could have been written by me, in fact, I just today posted a blog on my final solution for this problem which produced excruciating pain in my butt for about two years with no solution. I have a loop ileostomy with J-Pouch which has been disconnected/defunctioned but remains in place. My J-Pouch worked very well for about ten years until it failed and I got the ileostomy back again. Everything was pretty good for a number of years and then the butt pain and very painful pressure began. I described it to my surgeon as being like trying to pass a baseball through my anus, although all that came out was a little liquid mucus. Then it just began to be an almost constant part of my life. I used a product called "Colifoam" (European brand, also available in the US). It is a steroid foam applied with a short nozzle into the anus. This worked very well for quite a long time. This became impossible to use in the last 18 months since scar tissue apparently built up in the opening and the nozzle would no longer get inside far enough to deliver the meds.

I just saw my surgeon last week and found my best solution so far. He prescribed "Buscopan" which is called "Bentyl" in the US, I believe. This is an antispasmodic in pill form. I've been using this for only one week and I am already feeling results. I was waking up every hour doubled over with this cramping pressure and pain which was making me crazy from sleep deprivation. I'm not having as much painful pressure and it seems to be getting better every day... so far!! Time will tell but I am definitely having good results with the Buscopan.

You will continue to get fluid mucus coming out but that is something you have to live with. My sister gets me (to save embarrassment for me LOL!!) feminine pads when it gets bad which absorb the fluids very well and avoids a constantly wet butt which can wreck your skin. Life is becoming more tolerable in the past ten days and I'm hoping it will get even better.

My surgeon blamed scar tissue/adhesions inside the anus and further into the pouch for the pressure and cramping, especially after eating and during sleep, what little I got.

I would recommend asking your doc about "Buscopan" or some similar antispasmodic which might be available in your area. Have a look at the blog I posted today which covers most of what I've written here.

I hope you might find this helpful because this painful pressure was wrecking my life, as it must be for yours. Now I feel like I might even be able to ride my bike again and get some normality back. The last six months have been especially bad. If you can use the "Colifoam" you should try that first. If you can get the two-inch nozzle inside to deliver the foam it will give you some good results, if not then try the Buscopan/Bentyl. Google them and check it out for yourself and you will have a more productive conversation with your doctor.

I hope you feel better soon, all the best for the future.

Magoo again...the IBS site below has some good info on this problem as regards Buscopan and its equivalent in many countries.

http://www.ibsgroup.org/forums/topic/142638-buscopan-availablity-in-the-usa/

I hope you get some relief soon, you have to live with the fluid and mucus discharge but the painful pressure has a solution. I'll update on how well it continues to work for me.

Hi Magoo,

I can't thank you enough for this information. I will definitely check out your blog and the website you've provided. Keep me posted on how well you're doing. I hope others on this site check it out as well because your information could help so many. Thanks again!

Hi there again Octoberborn,

There is one more thing which doctors and surgeons seem to be unaware of concerning the Loop Ileostomy. I've talked about this before on the site but got no feedback about the particular issue. One member on the site explained about the two openings in my stoma with the Loop Ileo...many, many thanks to the wonderful, well-informed lady, nobody in the medical field had ever explained or made me aware of this.

The loop Ileo Stoma has two openings. One goes out the belly to the bag and the other continues down to the anus (usually with a view to reconnecting). Your output will always be very liquid, this is the usual case with an Ileo. While sleeping, the fluid can be sucked into the wrong stoma opening and end up at the anus. This liquid is extremely acidic and will cause major problems with irritation, itching, and pain. I now use little packs of absorbent powder which comes in little sachets about the size of a nickel (or a one Euro coin). I use two of these by putting them into the bag through the end opening in the bag (I use Hollister one piece). These will absorb much of the liquid so that the output is like a thick pudding (YUCK!!! LOL) texture. Since using these absorbent sachets, I get a lot less fluid coming out the butt and so a lot less irritation. This also seems to cut down on the awful feeling of pressure in my entire pelvis and specifically my anal opening. The European brand name is "Absorbagel", I know you can get it in the USA. This also cuts down on odor from the stinky stuff.

I explained all this to my surgeon last week but he sat up and took notice only when I told him that I had seen little pieces of carrot when wiping the usual mucus output from my butt....he actually wrote it in his notes so I know that this was new to him. The appearance of the carrot bits convinced me that the fluid going the wrong way played a big part in my problem. As I say, since using the Absorbagel, I get just very small amounts of fluid which is not causing the horrible feeling of pressure in my butt and pelvis. This combined with the Buscopan/Bentyl has brought the relief that I've achieved.

I don't think that the medical people put all this together and didn't consider it a major problem....well I/we do consider it a major problem. They are looking at the big picture and not the other details (considered unimportant by medical people) which can cause us endless problems and pain. I thought I might offend my surgeon by saying exactly this to him but he is such a nice guy and brilliant surgeon that he took my...almost criticism very well and changed his outlook on this problem, especially the carrot/food particles which appear in the mucus output.

The three things which brought the solution are....Absorbagel, the Buscopan, and "Colifoam" steroid which is applied via a syringe-like plastic tube, inserting as far as you safely can directly into the anus. The Colifoam brings down any swelling just inside and expelling the mucus is much less of a painful experience. I currently cannot use the Colifoam because of thickening scar tissue inside the anus but I apply as much as I can with the tip of my finger, as far inside as is safe, a surgical glove makes it less messy with less risk of further contaminating your insides or scratching with even trimmed fingernails.

What I like best about this solution is that there are no addictive substances, no opioids (Vicodin, etc.) are necessary. My doctors in the past were treating the symptoms, the pain, and not the root cause of the pain.

Sorry for rambling on so long but I wanted to be as clear as possible in my explanation. Result....I don't feel like what's left of my intestines are about to pop out my butt every time I expelled the offending mucus....Yipeee!!!

All the best to you and your family and I hope you get similar results.

PS: I love stew and now I can have it, even the pesky carrots and broccoli!!

Hey Magoo,

You can ramble all you want when it's this helpful. Thank you for the extra information.

Hi again, I just wanted to make sure I covered all the bases. I hope it helps you in some way. If you have any more problems, I'll do my best to help.

All the best, Magoo.