People who have endometriosis in the bowel and had operation, did you have to have a temporary storma? How long do they mean "temporary"?

I have agonizing pain in my right side of tummy for 10 years. Recently left side gets severe pain too...

I had a lapaloscopy in 2011, I was told that I have many adhesion in my pelvic area. My bowel is stuck to my womb and ovary. I do have bleeding after the bowel movement during my period. I have awful pain to open my bowel. This pain comes from 10 days before my period and end when my period become the heaviest (about day 4 or 5) so I have pain 1/2 of the every month...

The doctor thinks that I have endomitriosis on and in my bowel. My doctor's registorer told me if I have an operation, I may have a storma.

If the pain ease with this operation, I may want to go for it (operation to remove the loads of adhesion and endomitriosis). If you have experienced this kind of operation and woke up with a bag attached to you, please tell me the followings:

1. How were you "diagnosed" that you have endomitriosis in the bowel? - did you have an endoscopy? MRI?, something else?

2. How was your operation? How long was your recovery time? How long did you have the bag? I work full time, how long would I take time off work?

3. The storma bag is only temporary, isn't it? How does it end - another operation to saw up the hole for the bag?

4. Most importantly, how is your pain now?

Thanks in advance!

10 Replies

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  • There were several ladies on the following forum that had the procedure done in the USA, and I remember them mentioning it was just a few weeks between the ops before the bag was removed.

    endo-resolved.proboards.com... if the forum

    and

    endo-resolved.proboards.com...

    is the thread dedicated to bowel resections. There are a few post op experiences listed among the many questions, but you'll have to work your way down each page to get the useful info.

    It's something I am mindful of, because I have bowel endo too, and maybe will require that op at some point. Hope not, but it is something I wonder about when the rear end endo kicks off. but then it does calm down till next period in my case. I'm certainly not in need as yet.

    the following websites i have saved in my faves on the computer regarding bowel endo:

    mjwcooper.com.au/patient-in...

    ncbi.nlm.nih.gov/pubmed/163...

    news-medical.net/news/20120...

    danmartinmd.com/rvendo.htm

    and look up colorectal resection or colectomy for websites dealing with the surgery and advice for patients. Doesn't matter whether you need for surgery is endo or cancer or anything else, the surgery itself is much the same and recovery times too.

    i've not come across anyone on this forum who has had that surgery as yet, but that doesn't mean they haven't. I've just not noticed.

  • Wow! Thanks for sharing your information. I will go through each websites. I hope you are not in pain very much...

  • Please check out the BSGE website as there are specialist centres where expert gynaecologists deal with endo on the bowel and many of them say that very rarely do they need to do a stoma. Most of their work is done through a laparoscope.

    I hope you are near a centre and can access the best surgery.Ask lots of questions of the surgeon. Good luck.

  • Thanks. I had a look at BSGE. Unfortunately there isn't any centre near my place. London is the nearest but it would take 2 hours drive. Well I noted any possible centre I could go. Thank you for the information.

    I went to my appointment this afternoon. My consultant wants me to have MRI and another laparoscopy. I had laparoscopy in 2011 but it was done by different doctor in the same hospital. There are notes from the doctor but my consultant have to see himself in order to give me a right advice. If he say so I just have to accept but I don't want keep having laparoscopy with every doctor I see in the future! My current consultant seems a good one so I am hoping he will give me a good outcome.

    Regarding a storma. He has been doing this kind of operation since 1980's and he had give 3 people a stoma. He can't guarantee that he won't have to give me one but this was good enough answer. He also said the storma would be about 3 months if that happens. He was repeatedly saying I may not have endo inside my bowel so I shouldn't worry.

    Take care hilary100.

  • I had endo on the bowel. I first underwent a colonoscopy Iwhich is a tiny camera up the rear end and the consultant has a look at your bowel from the inside. With a laparoscopy, the consultant has a look at your bowel from the outside.

    My consultant, a specialist endo consultant, did tell me that endo actually inside the bowel is pretty rare and is it more often affecting the bowel from the outside as it is often stuck up internally and out of place where endo is advanced. He feels that a resection is only necessary when it has penetrated the bowel.

    I had mine treated by having the endo shaved off fexternally from my bowel as part of a wider 'radical excision surgery' to clear endo from the whole peritoneum.

    Try not to fret about having a stoma and a re-section until it has been established (probably by a colonoscopy) whether you do have endo internally or whether it is on the surface of the bowel.

    All very best wishes to you and hope you get the help you need.

    Lots of love x

  • Thanks for your reply, stevieflp. Are you pain free or significantly better after the operation? I haven't had colonoscopy (is it like an endoscopy?) yet. I was worried if my consultant would suggest it at today's appointment. I bleed after the bowel movement during period but not other time. Did you had this problem? My consultant said this is one of the symptom if you have endo in the bowel.

    The first appointment after the last laparoscopy (in 2011), I saw the assistant of my consultant as he was away and she told me I have a choice of removing adhesion from bowel or have a hysterectomy. Bowel adhesion operation may result of having a storma (she didn't even tell me that would be a temporarily thing!).

    Today's appointment gave me more reassurance which was good. My consultant thinks my pain is caused by more with adhesion than endo. My adhesion is mostly around the bowel. He wants me to have MRI next. Can MRI show endo? (I guess it will show adhesion) He said he wants to see if I have any cyst in ovaries or not as well.

    Thank you for your kind words.

    Take care.

  • Hi I had an emergency Hartmanns operation in September 2012 for perforated bowl, and a blockage the size of a golf ball in my descending colon. This left me with a colostomy (stoma) which saved my life. At first the surgeon thought I had bowl cancer but after tests it turned out that I had endometriosis. I was told that it is reversible and it would be done in 6 weeks after the operation but due a ulcerative colitis flare I had to postpone it. My operation is now due next Monday 29th. I have had a lot of support from the colostomy uk website I would suggest you take a look. I am still waiting to see a consultant about my endo as I have a lot of unanswered questions. I suffered excruciating period pains on my left side for many years and didn't think anything of it and that it was just one of those things. Now the endo has been removed my pains have disappeared. Please feel free to ask questions if I can answer them I will.

  • Hi KerryJ

    Thanks for sharing your experience. I hope very much that your next operation goes well. I will have a look at the colostomy UK website. I am so grateful that nearly every single illness has support forum. I am glad I joined here. Please take care.

  • I am glad you have had a good consultation today. I did not have bleeding (only from piles :)) but most of us have those from time to time, or a fissure - these are common where the bowel is not functioning normally. I have been absolutely fine since my op - over 2 years ago which is amazing considering how much pain I was in and how extensive the endo was. Yes a colonoscopy is exactly like an endoscope except the other end. It was uncomfortable but not unbearable and nowhere near as embarrassing as you might think when it actually came to it - particularly as my consultant turned out to be an amazing looking Italian guy - I thought OMG - but it was fine and it gives you the answers you need. If it causes too much discomfort, you can opt to be put out I believe.

    Best wishes x x

  • I am glad that you have been absolutely fine since your operation. I guess I have to have my bowel checked sometime to make sure. I don't probably have it done by good looking consultant...maybe:)

    Take care

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