Painful Ostomy with Pouch: Seeking Advice and Experiences

Hello, I'm in the UK and have recently had an ileostomy formed. I am 7 weeks post-op today. (I had severe ulcerative colitis and it was life-saving as I was very, very ill).

I am finding it very hard at present as I have tried a few different pouches but I keep getting very uncomfortable pain. I should mention I have a stoma and right next to it a small mucus fistula that was formed by my surgeon. I have to cut my pouches to incorporate the fistula as if I don't, it can leak/build up behind the wafer making the skin sore.

What I would like to know is does anyone have similar?

How long post-op roughly was it before the pouching became comfortable? I can't do much physical activity as it's so uncomfortable. I have granulomas underneath my stoma. My stoma sticks out by about 2 inches and is currently 40mm around. (Very big for an ileostomy I think, as a friend has had a colostomy and hers is 28mm and pretty flush to her tummy).

I have no sign of leakage but I do get a burning and pulling sensation, which is driving me mad. Only when I'm vertical. If I'm laying or sitting I don't feel it as strongly.

I have a lump behind the stoma, which I suspect is a peristomal hernia. Does anyone else have a hernia? I would love to hear if what I'm experiencing is normal.

Thanks

Well first, welcome to the new normal, and it's better than the old normal or what we were headed for. So everything you are dealing with individually is and can be kinda basic (I actually have all 3 issues myself). The tricky part sounds like the placement of the 3. I would assume the pain is probably generating from the fistula and pouching system moving against each other? So I pack my fistula with gauze to plug it from leaking. Is it possible to cut your pouch around the fistula so it's not under and you can change the packing?

Oh sweetie, my God!!!

I'm shaking my head while I read your profile and understand where you're at...

I first like to welcome you to the site and I hope you stay with us because you're going to find a lot of answers and you're going to still have questions, but the important thing is to be able to direct them to your doctor and see what he says.

I'm no expert on ostomies, although I'm about 12 weeks post-op having Ken butt surgery.

I had my large intestine removed back in 2016 and I had colitis and Crohn's since I was age 25.

So I got 37 years with inflammatory bowel disease and some of the stories I've been seeing and reading about how people within like a year of diagnosis get a stoma so quickly...

That's really sad because maybe the medications didn't really work, but for me, they did, but they prolonged the inevitable, which is where we are all at today with the stoma and a bag.

And maybe a Ken or Barbie butt.

So again, welcome, and I believe what the surgeon did when you say "he formed a fistula next to the stoma" makes me think he should have actually repaired the fistula before performing the stoma surgery.

He gave you a situation that I don't think I've ever heard of before, having a fistula near the stoma and having the patient needing to cut out the flange in order to accommodate it.

It just does not make sense.

I don't know what the hell he was thinking, and if I were you, I would be really upset with him because I think he messed up.

He caused more of a burden than was needed, and I hate when physicians do that.

So you have to question the surgeon's experience and seriously, what the hell was he thinking??

This is not normal!! Pain is not normal!!! Your situation is not normal!!! And I hope somebody here can help you, but as I've said, I have not seen any stories related to a fistula being made by a surgeon so close to a stoma. Your ostomy changes the playing field.

And yes, it is an incredibly large-sized stoma.

2 inches long? 40 mm diameter?

Ooohhhh, I feel for you, hon.

Sit tight. Someone else will chime in. Blessings. And keep your chin up.

Hi, thanks for your reply. Originally, the pain was from the pouch rubbing on the fistula. My nurse made a little notch to the side of the wafer to incorporate it into the void/circle, which gave me immediate relief. But something has changed since, and I'm finding the same type of feeling, but I make sure that I don't have the wafer touching it. I will speak to my stoma nurse and see what she suggests.

As the thought of being this uncomfortable forever is just unbearable. I want to live a full life. :-)

Thanks, I did try medication but my UC was very severe and had affected all of my colon. I was very weak and I was passing out all the time, so I had no choice but to get the surgery. Which has been successful in that I feel a lot better, it's just all the teething problems.

My skin seems OK. I do have some granulomas under my protruding stoma, so maybe that's what's causing my pain? These will be treated with silver nitrate at my next appointment.

The mucus fistula is sometimes incorporated when the surgeon forms a stoma to alleviate the potential for a build-up of mucus, which can cause problems. I still pass mucus through my stump though. It's permanent as I discussed with my stoma nurse. I wasn't aware of the fistula at first as the swollen stoma hid it.

I just want to be able to move pain-free. Seven weeks in now and I was hoping I would be healed. I was so poorly at the time of surgery that it's probably just taking my body that much longer to repair. I've only just lost the dissolvable stitches.

(Not sure yet if I should do the next operation or stay as I am. Hope you are recovering well). :-)

It takes time to heal. I really haven't heard of a surgeon making a fistula before. The granulomas could be causing pain. The best advice I can give is to get in touch with the surgeon and go back for an evaluation. Good luck, dear; things will get better.

As mentioned: Pain is not normal. Pain is your body alerting you that something is wrong. If possible, ask about stoma revision surgery. Fistula should be fixed, stoma size reduced. Try to get a different surgeon.

For now:

Look into moldable barrier rings. I used to cut my wafer hole exactly to fit my oblong stoma. After a few hours, my stoma would be uncomfortable and sting. Now I use a barrier ring, sealed around the stoma, and cut the wafer hole with plenty of clearance around my stoma. Very comfortable, no stinging, no leaks.

Takes about 3 months post-op to start feeling somewhat normal again with less pain. I'm at 1 year post-op and feel great. It does take time, and is not easy recovering.

Good luck

Thank you, I was thinking of trying barrier ring, and have ordered some to try.

You are right, I'm so impatient with the healing as I was so ill for so long and now mentally I feel well and can see light at the end of the tunnel. I want to run towards the light and get on, but I need to be more patient as I'm 7 weeks post-op, and things are not 100% yet.

Thanks for your reply 👍

Thank you, it seems to be uncommon, but my stoma nurse said it is sometimes made by the surgeon. See attached pic.

I'm hoping my stoma reduces in size, and the stoma nurse has said for me to be patient.

I'm scheduled to see my surgeon in Feb for follow-up. (I'm in the UK, so I have to wait my turn for the appointment. NHS - fantastic it's free but slow on outpatient appointments).

As long as my pain goes away and I'm comfortable, I will happily stick with the stoma as is. I had keyhole surgery and have only a tiny nick of a scar. (I was lucky.) I don't want to go through further abdominal surgery if it's not needed. I will give it some more time and will try a barrier ring.

Thank you for your reply.

 

..this is what I have. 

G-Day Littletink81, Have you had your colon removed? And have you still got your anus and rectum? And has your surgeon talked about doing a reversal? With answers to these, I would know which way to try and make a comment. Regards, IGGIE

I am so very sorry you're putting up with all this😔 and equally sorry as to what this surgeon did  causing u more discomfort and pain.I am mad at this wanker! 🤬

I have never heard of making a fistula to relieve mucus and I don't think anybody on here as ever seen or had anything similar to this.. No..it is not normal or done like this.

 

thank you for  those pictures.. Whoa!! 

that's amazing... I got a better idea of what's going on.. oh my God I just can't imagine anything like this.. You are the Warrior.

the surgeon  really messed up ..

I'm sorry . the fistula wouldn't be there unless he made it. that's neglect!!   if he made it thinking it would relieve  mucus that's stupidity.. I don't think anybody passes mucus really through their stoma.. I mean yeah thru the stump.. yes... sure.. thru a home made fistula?? NO WAY!!  I can't recall if you had your large intestine removed ? you have to be a little more specific with your plumbing. I have an ileostomy. and everything is gone down there. so I have a different story but looking at that photo where I see the stoma and the fistula  right next to it --OUCH! WTF??   that surgeon.. that wanker.. I don't know what the hell he was thinking and it's unheard of... I'm sorry it's totally unheard of to have a fistula   that close to a stoma... and I'm afraid you got a bad deal.. but I think you know you're dealing with it very well... and you have to be very patient.... and it sounds like you're running for that  light at end tunnel a little too soon...but there is light..true that..

right now, just sit back and get as  much information as you can ..

and I believe that fistula  could actually be removed.. I've had them but it was down in the anal region..  ask about getting rid of that damn  fistula.  or get rid of that wanker surgeon.

Sorry keep repeating myself.

I wanna focus on you..your mental health..spirits..YOU..next time.

Hi Littletink, welcome to the site. Are you sure it's a fistula and not a loop ileostomy? I second the idea of getting a different surgeon if possible.

Hi, yes colon removed, still have rectum and anus. I want to keep my stoma, don't want a J pouch or any reversal.

I've had a good day today, felt more comfortable. I have decided to change my pouch in the morning and evening as I was doing it once a day before, but due to my being so uncomfortable, it seems to have helped give me some relief. (I use the same template on my pouch, so it's not me cutting the wafer differently. I know that with an ileostomy I should be lasting 1-3 days, but at present, while healing, I need to do it a little more often as I notice the wafer breaks down when I wear it for a whole day.

It doesn't look like a loop. I haven't seen my surgeon since leaving the hospital, and at that point, it was swollen, so I couldn't see the other opening and it wasn't discussed. I will bring it up when I have my follow-up in February. UK - NHS = long wait for follow-ups/non-urgent outpatients.

My stoma nurse has said it is normal, but it isn't a given, so some have them and some don't. It is permanent, and as long as it doesn't cause pain or problems, I'm OK with it. I always cut my wafer so it's incorporated, so nothing is rubbing it, as that was a big problem at the beginning.

My surgeon is a lovely lady, really caring, and I have faith she formed this for a reason. But to be honest, she may have thought I will have a reversal. I was an emergency surgery, so not much time to go into the future. It was more about saving me as I was getting so weak; surgery was becoming dangerous. It was a scary time, but I pulled through and didn't end up in ICU as was expected.

Thanks for your reply :-)

Hi LittleTink,

I'm on the same side of the globe as you. I live in Ireland and I had a similar experience to yourself. I had emergency surgery resulting in a total colectomy and an ileostomy formation in August 2022.

It was really tough going (honestly, it took me about a year before I felt like "myself" again, but don't let that put you off, you will get there!).

I also developed a fistula about 6 weeks post-surgery. I spoke to the surgeon about it and he explained it was due to the remaining rectum being anchored to the inside of the abdomen. He advised the plan was to manage it for the time being and if it was unmanageable, he would then do surgery to fix it. This was okay with me as I was still physically really weak after the ordeal I went through back in July/August, and unlike your fistula, mine was lower down and it didn't interfere with the stoma bag baseplate.

The reason the rectum is left intact is to give the patient the choice of having J-Pouch surgery (this is my preferred option and I'm booked in to have the surgery in April), but as you mentioned already that you don't want J-Pouch surgery, then when you next meet your surgeon, let her know and she will outline your options.

I think the most important thing for the moment is to give yourself time to adjust and be kind to yourself! You've been through a lot, but if you have any questions or are experiencing pain, then your stoma nurse should be your first port of call. In my experience, stoma nurses are great and will make every effort to help you in any way they can.

Sorry for the long post but I hope this helps you some bit!

One other source I found really helpful was the IA support group. They are based in the UK and have really useful information for us less litigious "Euro types" ;)

https://iasupport.org/

Thank you for your message. :-) and Happy New Year.

So much to take in and some days are better than others! I've had a good couple of days and been comfortable since changing the bag more often, so I will continue what I'm doing. As I'm feeling a lot more comfortable, I also received a pouch cover from my sister-in-law for Christmas, and it makes it a lot more comfy. I didn't think it would, but the drainable clasp always digs or rubs and is a nuisance, but the cover keeps it all covered, so I'm much happier!

I agree stoma nurses are super helpful!

I can't wait to see my surgeon, but not until February, which seems an awfully long time since I had surgery on the 10th of November. But I guess I will be pretty much healed by then, so she can see clearly the issues.

Good luck with your surgery, I hope it all works well for you.

G-Day Littletink81, I really think you need to see the surgeon and get to the bottom of this. It looks too small for a loop. As you still have your anus, it could be for the mucus. As you want to stay with the stoma, have you considered having a Barbie butt? Then no mucus ever. Let us know the outcome. Regards, Iggie

I had the same problem when I first practiced fitting my stoma. The nurses, both in the hospital (U.C.L.H., London) and in the community (Finchley Memorial Hospital), were all brilliant and explained a number of methods that might help. One was to lie flat on a bed while fitting it, and another was to ensure the aperture (opening) on the bag fits precisely onto the stoma. Although these might seem obvious, it's good to check you're doing these things properly. My stoma opens into exactly the line of my pants and trousers, so I make sure they rest above the opening. The best advice was to make sure the inner rubber ring is exactly the right size; some are better shaped to fit onto the stoma than others. I've been on the identical learning curve for 15 weeks, so I'm only a little ahead of you!

I hope this helps!