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When did the pain a...
 

When did the pain and swelling around your ostomy go away?  

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PeculiarVeggie824
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March 9, 2019 8:49 pm  

Hi everyone, 

I'm 5 weeks in of my sigmoid colostomy surgery. The stitches are all dissolved but I still have pain, swelling, tenderness, bluish discolouration, and hardness around the stoma. It has gotten down, but it's still there and for this reason, i'm still taking stool softeners and laxatives because if the stool is formed, it gets really, really, REALLY painful and crampy as it stretches the stoma and the area around it when it exits. In fact, stool doesn't exit when it's formed unless it's liquid, which I really hate.

I'm close now to the 6 week mark that i've been told I should feel close to normal by. My stoma nurse had a look at my stoma and told me the area around the stoma and the incision is still quite swollen. So i'm a little worried. Is this normal? At what point did you notice that things are flowing through the stoma normally without pain?


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LK
 LK
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March 10, 2019 12:17 am  

Hello...I had similar problems after all my surgeries. Swelling lasted about 6 months with me, and anything that was not liquid really hurt going thru the pipes. I kept a food and stool journal to line up which foods were causing the problems. Some of the most innocent were at fault. Some changed as my guts healed and worked better. This is so worth the practice and if you ever end up with a bowel blockage, you can see what foods caused the problem and then avoid them. Another thing really helped was when I was able to pick up on the length of walks I could take. We are told 6 -8 weeks recovery in order to let our bodies rest and the swelling to go down. Because there is so much tissue and nerves where they operate, it can mess with everyones systems in a different way. Walking is the best start to get the healing and energy under control.  Just do not go lifting weights or anything too aggressive unless you speak to your doctor first. If you can, add a wide range of fruits to your diet, with or before or after a meal? Fruits that contain a lot of water, melons and such can help with this issue also. Frozen strawberries and grapes are awesome year round. Make sure you are drinking a lot of fluids in between and with your meals. I take water with me where ever I go when I leave the house. And the silliest thing I do after a meal, is to drink a big glass of water, milk, what have you, and then jiggle my torso around to mix every thing together until I can hear it, go ahead, laugh, I know you want to, and get the water down to the foods sitting in the bottom of my stomach.  It works for me and it also loosens up any trapped gas hiding under...say the spaghetti, or a big ole' loaded 6" sandwich from a take out restaurant. Picture that sitting in your stomach with only one glass of fluid on it. The small bowel adds fluid to help digest foods, and the large bowel will take it out. So, the extra water can be important. By adding the extra water and swishing, you can be sure it all gets wet enough to ease in digestion. Do not swish too wildly or too soon after surgery. Until the swelling is down you may want to eat softer easier to digest meals. I hope this was helpful to some degree. Make sure your doctor knows how things are for you. Most importantly, do not rush yourself too soon. It is hard to lay dormant when your brain wants you to be active. Healing takes time. Ask anything you need here, someone will have the right help. It may take a few days to get replies over a weekend, but you will get them. All the best and welcome to this site. 

 

Linda


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LK
 LK
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March 10, 2019 12:25 am  

Also, the bluish discoloration for me was deep bruising. Could you be cutting the hole in your plate too tightly to your stoma? That can cause swelling of the stoma. When you cut the plate, cut on the other side of the line and turn the bag when you cut, not the scissors. Also, on occasion Coloplast will give away free scissors. It pays to check with the  company websites to see what products they have that you may want to try later. Eric has done such a great job here, he even has a list of the companies and contact information. You could say that he covered our stomas! Ha! Ha!

Linda


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PeculiarVeggie824
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March 10, 2019 3:36 am  

Thank you very much for your reply Linda.

6 months! Oh my GOD! I'm sorry but that sounded absolutely terrifying for me because I am doing every single that is necessary to make my stool soft, including taking some nasty laxatives. But output does not leave the stoma at all if it's not diarrhoea. And when it does leave the stoma, it is VERY slow and EXTREMELY painful. 6 months of this would absolutely and utterly destroy me.

I am going to see my doctor just to see if this is some sort of a narrowing or stenosis or spasm of the stoma or whatever because I am starting to get very, very worried!


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VeganOstomy
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March 12, 2019 10:47 am  

I wrote a reply a few days ago, but didn't end up posting it because I got distracted :( 

I had pains for several weeks, which is considered quite normal, but they faded with time. After six months, I would absolutely be talking to my surgeon to find out what's going on if I still had pain. 

If you are experiencing pain when your stoma has output, I would suggest checking to make sure that the hole in your wafer isn't too tight. I've cut mine too tight a few times and it's extremely painful when passing output - even had bleeding around my stoma. Worth checking out if that's suspected. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
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March 12, 2019 6:21 pm  

PeculiarVeggie824...Not to worry.  That can happen to anyone.  At six  months, you really need to go to emerge if you can.  You will be seen by a surgeon a lot faster this way if you need one. This should have settled down a while back. Do not minimize your pain. This sounds like it is happening the time so tell that to them.  Make sure you take some extra supplies with you when you go. I carry enough for 6 changes. I have needed up to 4. Make sure you take water along and let us know how this works out for you. You may do this already, but... measure the size of your stoma often and if you need more graphs call you bag company and tell them you are having size issues and they can send you a bunch of them. I never throw them out when I get a new box, so I always have extra at home, but I have needed more from time to time and you will not regret having them on hand. Make sure you are drinking a lot more fluids then you think you are, and with your meals.  Eat lots of veggies. Your name says you either like them, or you feel like one sometimes! I know I feel like one sometimes!  Make sure you are not cutting that hole too small. Fear of a bad leak will do that to a person. Cut on the other side of the line and turn the bag not the scissors when cutting, it gives you a smoother edge. Please let us know how this goes for you. We can cheer you on here. If you have any issues at all that we may be able to help with, let us know. We like to try and help here. Be well and good luck with this. 

Linda


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PeculiarVeggie824
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March 12, 2019 6:36 pm  

Thanks for your replies Eric and Linda.

The hole in my wafer is always larger than my colostomy, so this isn't it.

I had a CT scan recently which didn't show any stenosis or hernia, so this isn't it.

The surgeon put his finger inside my colostomy recently, and it went in smoothly, so nothing wrong there.

The CT scan did show, however, retained stool just behind the stoma and there is still post-surgical swelling around the stoma. And like I said, the area around my stoma is still quite hard, swollen, and bruised.

As this point, they think it's the swelling that is causing the output to not leave the stoma the way it should leave. They are still not sure. They advised me to continue taking my stool softeners, and I am getting extremely anxious at this point and I don't feel like eating anything because it's been 6 weeks and I have always been told I will get back to normal after 6 weeks :(

Even gas has a hard time leaving the colostomy, I can actually feel the gas stuck behind the stoma sometimes and it's not a nice feeling at all.

I really hope it's just the swelling that's causing all this. The anxiety is killing me and i'm having a hard time sleeping. A million thoughts are racing in my head on what this could be. 😞😞😞


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VeganOstomy
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March 13, 2019 11:30 am  

Sounds like there's some kind of "kink" or bend behind your stoma.

Do you find any relief when you're laying down? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
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March 14, 2019 12:00 am  

PeculiarVeggie824...I had a lot of issues with swelling and I know how difficult it can be to deal with, but to have something that won't move for you, even more frustrating. I have massaged my tummy, the GI showed me how my guts are layed out and he gave me a few tips to do so, I have found that has helped when something gets stuck. It is not something I would do so soon after surgery, or without the GI saying so, but maybe check with yours and see what is said. I really hope that things settle for you soon.

The only way the swelling changed for me was when I resigned to taking things more easy then I already was, and accepting that this healing thing was going to take much longer then I would have liked. I did a lot of freaking laying around. Thought I would go insane. I crocheted a king size afghan laying down if you can imagine. Rest was what did it for me. I Hope things improve for you really soon. Try and hang in there with the stress thing. Find something you have not done for a really long time and get at it if you can, even if it is connecting with old friends. A telephone chat with someone you have not seen for a long time is good for the soul. With cell phones  these days, there is no number directory, so it is easy to loose touch with someone you never meant to. This is where us old things with land lines comes in handy! It does help to pass the long hours when you are used to being an active busy person. Maybe write letters to ones you love and tell them what you love about them and hope for them. All the best, let us know how things go.

Linda


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LK
 LK
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April 5, 2019 11:10 pm  

PeculiarVeggie824...I had some time sitting around today and thought about some of the people on this site that are having issues, and you were one of them.  I can not help but wonder how things are going for you now.  If you have the time, let us know how things are going and if matters have improved any. I know that I would like to know. I hope you are well, and that things are showing signs of improving. Pain with little knowledge of what is happening is just rotten. Anyways, I hope spring is treating you well and winter is in the rear view mirror. 

Linda

Linda


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PeculiarVeggie824
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May 9, 2019 11:40 am  

Hi there Linda, Eric, and everyone.

So it's been 3 months since my surgery and the incision around my colostomy has showed progress with healing, but unfortunately there is still one small place in the incision at the bottom of the stoma. The skin is mildly separated from the colostomy there and that's where I still have pain. It's quite a small area but the pain can be immense, especially after a shower with the appliance off. 

I saw my stoma nurse 3 weeks ago and she just said to apply stoma powder in that small area on the days that I change my appliance and it will heal with time. It still hasn't healed and i'm started to feel down again :(

Hopefully it will heal with time like she said. Just don't understand why it's taking that long.


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VeganOstomy
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May 9, 2019 11:47 am  

Hey PeculiarVeggie824, did you see your surgeon about this skin separation? I would speak with your stoma nurse again and maybe even your surgeon if you are more concerned about it. 

Sometimes wounds do take a very long time to heal, but if you are in pain, I'd prefer that it be looked at sooner rather than waiting. Good luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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PeculiarVeggie824
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May 9, 2019 11:51 am  

At 13 weeks post op, this is what things look like. The area of the pain is where the arrows are pointing.

1557417097-1.jpg

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john68
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May 9, 2019 12:45 pm  

Hi, I can see how it’s painful when output moves, I would definitely have the Surgeon have a look. In the meantime a little stoma powder and use part of a barrier ring so that area is kept well away from output. It may be easier to put the ring on the wafer rather than on the skin 

ileostomy 31st August 1994 for Crohns


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sjlovestosing
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May 9, 2019 1:33 pm  

Hi Peculiar Veggie,

I am sorry that you are going through all this difficulty in your first three months.  I agree with everyone so far in that you should have your stoma nurse and your surgeon look at it. Also, John is right in that you may need to use stoma powder on it for a while. Wishing you luck in all this.

Stella


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dogtalkerer
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May 9, 2019 2:16 pm  

looks like you have a small granuloma at 7 o-clock.   I have a couple myself and they seem to contain nerve endings, my hurt a bit if I bump them right.


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LK
 LK
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May 10, 2019 12:57 am  

Hey, I was wondering how you were doing. So sorry you are still having troubles with this, but I have to be honest, this looks like mine did. Does that nib at 7 o'clock hurt? I have not seen that before. What helped me was, I used to take my thumbs and fingers and wrap them from both hands around my stoma when my guts moved. It was often. I applied a slight pressure, and layed down and between the output, I turned from side to side. Resting was the only thing that relieved the swelling. When they operate, they move things inside and nerves and all sorts of things are affected. Everyone is different. When swelling went away, it really went away. Do not wear anything tight on your stoma, no pressure from zip pants. You have gut instinct for a reason, if this feels really wrong to you,  go get a second or third opinion. If your doctor won't refer you, you can get around this. I remember the pain well. Show up at a different hospital ER, say you were in the area and could not get home like this or drive safely anymore, and get a different doctors opinion. This is not what Eric or this site is about or recommends. At that, with me, it was swelling that just took forever to go away. What do the scars of other incision look like? Are they red and swollen also? If so, seek another opinion. I am so sorry you are going thru all of this. It really sucks royally. Not to mention that men are taught to be strong and keep that stiff upper lip and not complain. It may be time to set that aside and complain. I had peritonitis after one surgery and I never developed a fever. It was the one thing they were looking for to prove the peritonitis. It is documented and now, they do not take risks with me. Best of luck and keep us in the loop.

Linda


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VeganOstomy
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May 10, 2019 12:22 pm  
Posted by: PeculiarVeggie824

At 13 weeks post op, this is what things look like. The area of the pain is where the arrows are pointing.

1557417097-1.jpg

After my surgery, I had a lot of pain in the areas you indicated, but for me, it was being caused by output eroding the skin. Once I changed my appliance change schedule and cut my wafer appropriately, it got better. 

I notice you've got hair growing out of your skin where the wafer should be - do you shave or cut those when you change your appliance? You might find that leaving long hair will create more opportunities for leaks, the wafer not sticking well, or a less than ideal appliance wear. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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dogtalkerer
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May 10, 2019 2:36 pm  

sometimes that long hair will get pulled too by the bag flange , not very comfortable......


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