Endo on the bowel: Finally I'm getting an... - Endometriosis UK

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Endo on the bowel

Abi_97 profile image
35 Replies

Finally I'm getting an ultra sound biopsy for celiac and a sigmoidoscopy for crohns but I was wondering for people with endo that penetrated the bowel did it show up on a sigmoidoscopy or did you need a colonoscopy? Thought I could kill two birds with one stone 😂

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Abi_97 profile image
Abi_97
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35 Replies
Lovisa profile image
Lovisa

I had endo penetrate my bowel but thankfully it only penetrated 3 layers so it didn't go fully through. I never had any scans or tests for mine, they only released how far it was when they went to remove it but this was in 09 I think.

Abi_97 profile image
Abi_97 in reply to Lovisa

I hope you dont mind but do you have bleed through your rectum on your period? 😮

Lovisa profile image
Lovisa in reply to Abi_97

I do from time to time, I had a colonoscopy in October and nothing showed up -.- mostly happens round the time I ovulate and when I'm on a period x

Abi_97 profile image
Abi_97 in reply to Lovisa

Ooh no okay 😮 I have that every period so might be on the bowel 🤔 X

MissyTx profile image
MissyTx

I’ve just had endo on my bowel, as far as I’m aware the only way to see how aggressive it is is via an MRI scan, I’m fairly confident that a colonoscopy wouldn’t show it as I had an MRI scan and would have thought the cost of an MRI would have been significantly more. I think even if it is found on the bowel during a colonoscopy you would be referred for an MRI scan as it would need to be reviewed by a bowel surgeon separately and they would need to refer to the scan when performing the bowel resection if that was required. (I was informed of exactly this before my surgery 2 weeks ago where a bowel surgeon was present)

For endo to fully penetrate the bowel it’s quite rare, I have horrendous endo, have had a series of ops and treatment for years and mine was on my bowel but hadn’t penetrated. I knew it had spread to my bowel as had very specific Symptoms which had changed dramatically. I would certainly cut out the middle man and request an MRI.

Good luck lovely xx

Abi_97 profile image
Abi_97 in reply to MissyTx

I thought colonscopy is the only way to see if its penetrated the bowel 😮 I've already had an mri but my specialist forgot to request it so they never looked at it but they said they might do a colonscopy to check if its penetrated the bowel 😮 Thank you for the reply though 😮 Xx

MissyTx profile image
MissyTx in reply to Abi_97

That’s odd as an MRI scan gives a far more detailed picture showing the layers of the bowel and tissues etc, so did the MRI show endo in or on the bowel? I’m not an expert by any means, I can only go by what my consultant has told me who is an accredited BSGE consultant. Are you being treated at a BSGE centre? You could always ask for a referral if You wanted a second opinion. And you can request that your MRI is reviewed by a bowel surgeon.

I would say quite confidently that if the endo was not shown on or inside the Bowel on your MRI then if it is inside the bowel and seen via your colonoscopy then it would only be very small traces and not the disease it’s self. MRI is used in very aggressive cases of Endo when operating is usually the best form of treatment.

Again, I’m only going by years and years of what I have educated myself on and what I’ve been informed by bowel and endo consultants.

I had my MRI as had to have surgery and they needed to perform the MRI so that the imaging could be referred to when they operated and should they need to make a stoma xx

Abi_97 profile image
Abi_97 in reply to MissyTx

I kinda demanded to see the specialist so they werent really prepared for me but they are going to request my mri and notes and ring me boack to talk about what happens next 😮 I'm only going off what my specialist said if they suspect I have endo thats penetrated the bowel they may do a colonscopy 😮 Maybe the sigmoidscopy will be too short it was worth a try anyway 😂 Xx

MissyTx profile image
MissyTx in reply to Abi_97

I would certainly ask the question as they may just go for the full colonoscopy rather than put you through both, you may be lucky if they can see it on the sigmoid but if like me you have endo higher up the bowel they could miss it. I think your MRI would probably help and give an idea of where abouts it is infected. Good luck xx

Abi_97 profile image
Abi_97 in reply to MissyTx

Because the sigmoid is actually for crohns I wont ask but I will mentally prepare myself 😂 Thank you though xx

MissyTx profile image
MissyTx

To add.... a sigmoidoscopy is only the lower portion of the bowel...the bowel runs a lot higher so that wouldn’t rule out endo much higher even if you could see it anyway xx

Char411 profile image
Char411

I’ve had both an MRI and colonoscopy as I have bowel symptoms and rectal bleeding on my period. My colonoscopy was clear but my gastroenterologist said that doesn’t mean there’s not endo there and that if they redid the colonoscopy whilst I was on my period he wouldn’t be surprised to find endo cells inside. At least a colonoscopy will put your mind at ease regarding crohn’s. Maybe you should request a full colonoscopy not just a sigmoidoscopy as that won’t look in your small bowel, when given your digestive issues I would say is a must.

Big hugs xx

Abi_97 profile image
Abi_97 in reply to Char411

Oooooh interesting 😮 That make sense 😂 Btw how did you get along with the bowel prep if you dont mind me asking? 😮 Thank you I'm not too worried about it not being a full one because its the left side I get pain and upper area and they are doing both a stool that will show crohns and ultrasound that will probably show lumps and bumps so they wont miss much I think just endo 😂 Xx

Char411 profile image
Char411 in reply to Abi_97

I had the bowel prep that makes up 2 litres, it wasn’t very nice but it didn’t make me feel sick. The first time I had it, it didn’t work but the second time it did as I had to take laxatives with it.My friend had picolax which seems easier as it’s a small amount. My pain is left sided too. Xx

Abi_97 profile image
Abi_97 in reply to Char411

Ahh I've been given moviprep I'm hoping that will be okay thank you though it gives me slight relief 😊 Its weird I dont really feel pain there a lot but when he was pressing my stomach it was there that hurts 😮 Xx

Char411 profile image
Char411 in reply to Abi_97

Moviprep is the one I had too. It just taste too terrible, towards the end I added a dash of lemonade which made it much easier to finish ha ha xx

Abi_97 profile image
Abi_97 in reply to Char411

Ahh I was thinking adding orange squash anyway but thank you 😮 Xx

Hazeybabes profile image
Hazeybabes

I had a colonoscopy just prior to being diagnosed with DIE and it showed nothing. My laparoscopy in December showed I had endo and an ovary attached to my bowel and I am booked in to have an MRI scan next week to see how bad and what operation is required next. But I believe that an MRI is the only clear way to see how much it has penetrated the bowel.

Hope you get answers soon x

Abi_97 profile image
Abi_97 in reply to Hazeybabes

Ahhhh okay I dont know why my specialist wanted to look in my bowel then even though I've had an mri it seems like a lot of effort haha 😂 Thank you xx

Ria29 profile image
Ria29

I had my MRI on Wednesday and my colonoscopy on yesterday. Got told that I have erosion, inflammation and some ulcers which could be caused by Crohns, they took some biopsy so just need to wait 2 weeks for all the results to come back.

I would get some of the wet flush-able toilet paper. My bum was so sore by the end of the day but the prep didn't taste to bad. Maybe sleep on a towel as well, as I did start to leak, oh the joys we have to bare.

Good Luck x x

Abi_97 profile image
Abi_97 in reply to Ria29

You were sick were you? Which prep did they make you use? 😮 Thank you for the advice though I'm kinda freaking out about the prep 😂😂😂 x

Ejl2688 profile image
Ejl2688

Hi, please can someone have a look at my post to see if anyone can help? many thanks!!

Abi_97 profile image
Abi_97 in reply to Ejl2688

People reply if they know a way to help I've had posts before where nobody has replied because nobody knew the answer I'm sorry if you havent got answer but I want answers to my question on my post and people who have replied to my post will only see your comment if they revisit my post they wont get any notifications 😮

Ejl2688 profile image
Ejl2688 in reply to Abi_97

Thanks for letting me know, kinda new to this so was wondering if I did something wrong so my post was not seen. Thanks!

Abi_97 profile image
Abi_97 in reply to Ejl2688

Welcome it can take a few days for people to notice as well 😮

Kelly3322 profile image
Kelly3322

I had mri which showed endo on my bowel and then had sigmoidoscopy to see if it had penetrated my bowel wall. Luckily it hadnt! But yeah I believe they would do a colonoscopy or sigmoidoscopy to check if it' gone through bowel wall. Xx

Abi_97 profile image
Abi_97 in reply to Kelly3322

If you dont mind me but how was the bowel prep for you? 😮 Hmm we will see 🤔 Xx

Kelly3322 profile image
Kelly3322 in reply to Abi_97

They sent it in the post for me and I was like hell nah I can't manage this lol. So I went in early and told the nurse and they did it there. They put numbing cream on me before the enema and she told me to try hold it for 5 mins. Literally as soon as she left room I was on toilet. It wasn't pleasant but needed to be done. I found the sigmoidoscopy very uncomfortable. I wanted to watch the screen but all I managed to do was tap my forehead with my eyes closed till it was done! Good luck xx

Abi_97 profile image
Abi_97 in reply to Kelly3322

Oh no 😮I know a lot of people are sick due to it and it scares me 😭 Oh god I wouldnt be able to look at the screen anyway I'm so squimish 😂 Xx

Devils_Advocate profile image
Devils_Advocate

I had a bowel resection in 2016 as endo had penetrated my bowel....which was confirmed via the lab post surgery too. I had a sigmoidoscopy in which it was not picked up...I had my bowel shaved as part of excision sugery in 2013 and they realised the extent of it. My symptoms returned and I had a colonoscopy (which I found painful due to adhesions and scar tissue on my bowel). The bowel surgeon wanted to rule out Crohns/ulcerative colitus and he also ruled out celiac. I was told there was inflamation but not much more and was preped for my bowel surgery...which was joint surgery. I hope you get answers d x

Abi_97 profile image
Abi_97 in reply to Devils_Advocate

Ahhhhhhh okay thank you 😮 How was the bowel prep for you and were you losing weight if you dont mind me asking? 😮 X

Devils_Advocate profile image
Devils_Advocate

Bowel prep was fine. Just stay next to a toilet lol. At first I never think it is working but the second drink clears everything. I started to but it was nothing drastic. I was going the toilet about 10 times plus around my period but because of the pain I wasn't particularly active x

SadieMae_1kitty profile image
SadieMae_1kitty

Hi,

So I have had colonoscopy and sigmoidoscopy, both showed no GI issues however, I had some ulcers in colon caused from inflammation, even after stressing to GI DR that my periods were irregular and pelvic pain was excruciating that was overlooked.

I ended up at ER with heavy bleeding during bowel movements from backside and extreme pain in pelvic and lower back. The ER Dr was very familiar with bowel endometriosis and stated that this can only be seen with the surgical procedure.

I am now on birth control and see OB on 30th.

My advice to you is listen and follow how you body is changing.

best wishes to you for some answers and solutions.

Abi_97 profile image
Abi_97 in reply to SadieMae_1kitty

I'm sorry you had to go through that 😭

I now long bleed through my butt due the coil I still have pain but my sigmoidscopy came back normal 😮

Hopefully I will find out through my endo specialist soon whats the next thing to do 😮

SadieMae_1kitty profile image
SadieMae_1kitty in reply to Abi_97

Hope your endo specialist can help you! This all is definitely frustrating, not a good quality of life😞

Hope you get answers.

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