Hi. I had colon cancer 16 years ago and my colon was removed. Last year the 18th of May just after supper, I got very sick and was in terrible pain. It was a obstruction and I got a ileostomy. I was 2 months in hospital due to complications. Now it is me and this bag. I do not care to have a bag, I cannot tolerate the pain! Whenever there is bowl movement it feels like acid is burning me. But not the stoma. It is inside me, next to the stoma. I went to my specialist. He said because of the damage to my intestines he does not recommend a closure, it will be to risky and also no guarentee that it will take the pain away.I MUST LIVE WITH IT! I cannot. I try to have a normal life, but it is very hard when I am in daily pain. I want to know of there is anyone with more or less the same the same problem. I have a problem with eating. Every time I eat, I am afraid of the terrible pain. Please forgive any misspelling or wording my home language is Afrikaans, but I do understand English very well! Is there anybody who can advise me or have the same problem.:shifty-t:
Need Stoma Advise
- Thread starter Hannetjie
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Jul 1, 2011
- Messages
- 15
Hey, I have had an ileostomy for 15 years. Are you sure the pain isn't coming from your stoma? The flange isn't fitted too tightly? have you had this burning since you had the surgery? How is the skin around the stoma, is it sore?
Sorry for all the questions but there could be a number of reasons for the burning pain. Did your doctor not give any explanation for it? Not a very nice thing to say to just live with it.
I would try a very light diet for a few days and see if there is any improvement, give the stoma a rest, nothing that doesnt digest well. Rice, pasta, chicken, fish. Nothing too acidic.
Feel better
Sorry for all the questions but there could be a number of reasons for the burning pain. Did your doctor not give any explanation for it? Not a very nice thing to say to just live with it.
I would try a very light diet for a few days and see if there is any improvement, give the stoma a rest, nothing that doesnt digest well. Rice, pasta, chicken, fish. Nothing too acidic.
Feel better
PsychoJane
Moderator
- Joined
- Mar 9, 2011
- Messages
- 1,199
Hello Hannetjie,
That's a delicate and unfortunate situation to be in. I am trying to understand what could cause you the burning pain. Did you specialist had any explanation to justify the reason you experience pain all the time? I don't think that this burning sensation is "normal", and I am guessing there might be a condition related to that. Nothing has been investigated?
I have my ileostomy since 1999 I never really had discomfort from it except when I would get partial obstruction or like now, as I have fistula (those feel like Im burning from the inside... and this is actually what is happening...).Believe me, I feel for you if you are experiencing that kind of pain. Plus it gets really hard to eat in these conditions. I am just curious, has your surgeon or a GI done exams to see if you had some sort of narrowing at your stoma? I'm asking since you don't seem to have IBD, hence, I doubt it would be a fistula (even though there is a chance to have that secondary to a surgery, but then you would also have pain around your stoma I believe), so I think that it would possibility be related to stenosis of the stoma? Like, is your stoma smaller than it use to be. It happens during the healing process, sometimes the scarring from healing can cause a progressive diminution of the size of the stoma and then it's possible that the stool could have problem passing (Do you have problem at all with that?). If that were to be the case, there are interventions to improve these type of conditions.
I just don't believe you should have to cope with the pain daily, ileostomy per say should not be something painful. I hope this helps you a bit and that you will find a solution quickly
That's a delicate and unfortunate situation to be in. I am trying to understand what could cause you the burning pain. Did you specialist had any explanation to justify the reason you experience pain all the time? I don't think that this burning sensation is "normal", and I am guessing there might be a condition related to that. Nothing has been investigated?
I have my ileostomy since 1999 I never really had discomfort from it except when I would get partial obstruction or like now, as I have fistula (those feel like Im burning from the inside... and this is actually what is happening...).Believe me, I feel for you if you are experiencing that kind of pain. Plus it gets really hard to eat in these conditions. I am just curious, has your surgeon or a GI done exams to see if you had some sort of narrowing at your stoma? I'm asking since you don't seem to have IBD, hence, I doubt it would be a fistula (even though there is a chance to have that secondary to a surgery, but then you would also have pain around your stoma I believe), so I think that it would possibility be related to stenosis of the stoma? Like, is your stoma smaller than it use to be. It happens during the healing process, sometimes the scarring from healing can cause a progressive diminution of the size of the stoma and then it's possible that the stool could have problem passing (Do you have problem at all with that?). If that were to be the case, there are interventions to improve these type of conditions.
I just don't believe you should have to cope with the pain daily, ileostomy per say should not be something painful. I hope this helps you a bit and that you will find a solution quickly
More people with ileostomy?
I hope I answer correctly? I am so, so new in this forum and still trying to figure it out! It is so great, so wonderfull to speak with someone who also had a stoma!! Sometimes I feel like an allien....I have one friend in South Africa with a stoma and she is going next month for a closure.
In the beginning I had problems, but then everything went well. Until December. First my skin went red around the stoma and terribly sore. And then the pain started on the left side of my stoma. But I though it was the skin. A Month ago I watched when I had bowl movement. And BEFORE the .... came out, I had this terrible burning pain on the left side. Now my skin has healed. But the pain is still there. I use now for the first time painkillers and I feel better for 3 days now. But it is still there. I do not understand why other people cope with their stoma's and I cannot. I am so frustrated. I am going for a second opinion in May month. I cannot believe that I need to live with this. It effects my whole life. But I also dont want to go for the closure, I will be quite satisfied to live with the stoma, with now pain. Did you mean pasta, chicken, fish is okay to eat? What type of food must I not eat (acid food).
I hope I answer correctly? I am so, so new in this forum and still trying to figure it out! It is so great, so wonderfull to speak with someone who also had a stoma!! Sometimes I feel like an allien....I have one friend in South Africa with a stoma and she is going next month for a closure.
In the beginning I had problems, but then everything went well. Until December. First my skin went red around the stoma and terribly sore. And then the pain started on the left side of my stoma. But I though it was the skin. A Month ago I watched when I had bowl movement. And BEFORE the .... came out, I had this terrible burning pain on the left side. Now my skin has healed. But the pain is still there. I use now for the first time painkillers and I feel better for 3 days now. But it is still there. I do not understand why other people cope with their stoma's and I cannot. I am so frustrated. I am going for a second opinion in May month. I cannot believe that I need to live with this. It effects my whole life. But I also dont want to go for the closure, I will be quite satisfied to live with the stoma, with now pain. Did you mean pasta, chicken, fish is okay to eat? What type of food must I not eat (acid food).
Thanks
Hi thank you for your interest in my problem. I allready feel better only speaking with other people regarding my problem.
I am going in May month for a second opinion. I only want to find out why this pain? It is on the left side of the stoma. And the specialist to whom I went, just said there is no cure. He only put his finger in the stoma and that was it! I must say, I love him very much, but this time I think he must do more test.
Hi thank you for your interest in my problem. I allready feel better only speaking with other people regarding my problem.
I am going in May month for a second opinion. I only want to find out why this pain? It is on the left side of the stoma. And the specialist to whom I went, just said there is no cure. He only put his finger in the stoma and that was it! I must say, I love him very much, but this time I think he must do more test.
Hello Hannetjie,
That's a delicate and unfortunate situation to be in. I am trying to understand what could cause you the burning pain. Did you specialist had any explanation to justify the reason you experience pain all the time? I don't think that this burning sensation is "normal", and I am guessing there might be a condition related to that. Nothing has been investigated?
I have my ileostomy since 1999 I never really had discomfort from it except when I would get partial obstruction or like now, as I have fistula (those feel like Im burning from the inside... and this is actually what is happening...).Believe me, I feel for you if you are experiencing that kind of pain. Plus it gets really hard to eat in these conditions. I am just curious, has your surgeon or a GI done exams to see if you had some sort of narrowing at your stoma? I'm asking since you don't seem to have IBD, hence, I doubt it would be a fistula (even though there is a chance to have that secondary to a surgery, but then you would also have pain around your stoma I believe), so I think that it would possibility be related to stenosis of the stoma? Like, is your stoma smaller than it use to be. It happens during the healing process, sometimes the scarring from healing can cause a progressive diminution of the size of the stoma and then it's possible that the stool could have problem passing (Do you have problem at all with that?). If that were to be the case, there are interventions to improve these type of conditions.
I just don't believe you should have to cope with the pain daily, ileostomy per say should not be something painful. I hope this helps you a bit and that you will find a solution quickly
David
Co-Founder
Hi there and welcome You've received some wonderful advice so far but I also wanted to take a minute and point you in the direction of our stoma forum in case you hadn't seen that.
I wish you well
You've received some wonderful advice so far but I also wanted to take a minute and point you in the direction of our stoma forum in case you hadn't seen that.I wish you well
