Hi, I'm recovering from a bowel resection after recent surgery for my endo and wondered whether anyone else had had this done? Thanks

[Katie1980]

I've been diagnosed for over ten years, have had previous laps and diathermy which worked in the short term. My recent op removed my right Fallopian tube, unstuck all the fused areas, but was complicated by the endo which had gone through my bowle wall causing a stricture. I now have a stoma, and am hoping for a reversal in about three months. We were in the early stages of IVF consultancy, had been approved and referred but they would not proceed until the right Fallopian tube (which didn't work at all) was removed. This has out us back at least a year!

[Hidden]

Bless you, it sounds like you have been through so much. My situation was the other way around, it was during surgery that they found endo. After suffering lower abdo pains for 18 months I was referred to gynae and had internal ultrasounds, etc. but nothing showed up. I had another appointment explaining that it was painful when I went to the loo so they said it sounded like a bowel problem so I was referred to the bowel department. After numerous painful endoscopies and a CT scan they noticed an unusual lump on the wall of my sigmoid colon. In 2012 I had a sigmoid colectomy to remove the lump. I was told that during my op they called gynae in as they found signs of Endo. And the results of my colectomy confirmed that the lump which was removed was also Endo. After my recovery when I came off the post-op painkillers my lower abdo pains returned. It obviously wasn't the lump that was causing the pain. I had a mirena coil fitted in 2011 but this never seemed to stop my periods. So to numb the pain I am now taking a desogestrel pill which seems to be stopping my cycle and therefore the pain. I have been given no advice about endo or what can be done to remove it. They just seem to be 'numbing the pain' as a cure! Obviously the op had to be done as they had no clue what the lump was but I'm no further along two years later.

I hope you are recovering well, I had 4 keyhole wounds and a 5 inch incision, you don't realise just how much you use your stomach muscles until you don't have any! x

[Katie1980]

Thank you so much for responding, it's good to know I'm not alone! I have been fortunate in having some good care, and was referred by my gynaecologist to an endometriosis specialist. He organised a flexible sphygmoidoscopy which identified the problems in the bowel. The surgery was extensive as they not only did the bowel resection but also excised all the endometrial tissue they could find! which was everywhere! Something my endo surgeon said has stuck with me though, which was that if he was successful in removing all the endometrial tissue then there was an 70% chance that it may not recur which is more optimistic than anything I have ever heard or read.

And I know what you mean about stomach muscles! I cleaned the bathroom today and I'm regretting it now!!! I'm too impatient to be a good patient!

[Hidden in reply to Katie1980]

Well, I wish I'd been diagnosed before my colectomy then perhaps they could have done something about it. They literally called gynae in during my op to confirm what they thought they had found. My post-op care was rubbish to be honest. I didn't even see my surgeon after my op, it was the anaesthetist that visited me in the ward and said what happened during surgery! Then during my recovery time I had the letter confirming what they removed was Endo. So, I have no idea how bad it is or in fact where it is, I was just told they found Endo dotted about. Your surgeon sounds like a legend!

How on earth have you tackled cleaning? I could barely move for 3-4 weeks!

[Katie1980]

That's shocking care, before I was discharged I saw the bowel surgeon the endo specialist and the anaesthetist. And I have follow up appointments with both the bowel and the endo teams. The variability in care provided nationally is scary.

Everyone keeps saying I'm doing well, I do get tired easily, and I am sore, but I can't sit and watch bad tv for much longer! That said, I don't think I had appreciated how serious my symptoms all were, and my pain levels, until I have stopped, and so I plan to take the time afforded to me to rest.

My period is due next week and I'm half terrified I'll be in agony as usual, and half excited that I'll be able to feel an improvement in my pain levels.

Sounds obvious, but have you requested a second opinion, or sought another referral from your GP? You need to know what you're dealing with. After my last lap and diathermy they even showed me photos taken during the procedure which made it easier for me to understand what was happening.

[Hidden in reply to Katie1980]

I had a post-op follow up appointment in the colorectal department but only saw a nurse who basically just checked my wounds were healing ok. After I received the letter confirming the result I thought I may have a follow up from gynae or something but nothing. It was only when my pains returned after my recovery that I revisited my GP and she gave me the mini pill alongside my mirena to stop my cycle and the pains.

The first week of sitting in front of the tv was ok, only because I couldn't really do much else, but after a while you go mad! I was in hospital for 6 days and then had another 3 weeks at home. After two weeks I was up and about a bit more but still struggled to do very much. It does make you tired though, you don't quite realise what your body has been through, I think my op was about 4 hours!

I think because the pain has been kept under control I've kind of put it to the back of my mind. But clearly, its not going to go away on its own. I think before long I should go back and ask for a referral to see if it can get investigated further. When I initially had the pains, before I was referred to the bowel surgeon, I had an internal ultrasound which showed up nothing at all. So, apart from one area where I always seem to get the pain, I think it must only be very small amounts.

Good luck next week, lets hope its the latter, eh x

[Katie1980]

Thank you again. I would request a lap rather than an ultrasound as this will provide more accurate detail. But do keep pushing!

Take care and I hope all goes well x

[Hidden in reply to Katie1980]

Thanks, the previous ultrasound was to see where my initial pains were coming from so I think they were looking for ovarian cysts, etc. I'll definitely speak to my GP and request a lap, I need to know what I'm dealing with!

Thanks for your advice x

[Hidden]

I just wanted to send you all my best wishes on your recovery.

I have my bowel stuck and I am having a camera up my bum (flexible sigmoidoscopy) in a few weeks to see if the Endo has penetrated the bowel. It's the thing I'm most frighted off. Did you have any bowel problems prior to your surgery?

Thank you for sharing your story. And my fingers are crossed for the IVF.

Best wishes,

Barbara x

[Hidden in reply to Hidden]

Hi Barbara

I had no clue what to expect from the flexible sigmoidoscopy but it wasn't too bad at all. I had a full endoscopy too, all the way round which was a bit painful for me as they had to pass by the obstruction which was causing me pain but I wouldn't worry. They gave me some sedation but I didn't really notice any effect, I had gas and air which helped.

Apart from some pain I didn't have any other bowel problems before surgery.

Good luck x

[Katie1980]

Hi Barbara,

My bowel symptoms had been increasing for about 6 months and it was very painful. I was dreading the flexible sigmoidoscopy and if I'm honest, it was painful even with gas and air, but that's because there was a complete structure which meant that they couldn't continue as they couldn't get the camera to go any further.

Just as a point, I had to have my flexible sig whilst on my period, and if this is possible, do it, as any issues will be evident more clearly at that time.

I know it's easy to say, but try not to be too nervous, it will be alright. X good luck x

[Jolene2905]

Hi!

I had the camera up the bum last june and whilst it was unbelievably painful when it reached point where the endo was I was then booked in for a resection in September but was unable to have it then, so had a bowel resection in November for Endo and most of my pain has gone now, even during my period, I stupidly thought it would be similar to my previous 5 ops for endo but no where near, give yourself more recovery time, I had three months of work and it is still niggly now, where did you have your op? On a really positive note I wax gobsmacked to find out recently I am pregnant so fingers crossed for you too x

[Katie1980 in reply to Jolene2905]

Hi Jolene,

Congratulations!!! That is such exciting news!

Thank you so much for your message. It sounds like your experience of the camera was much like mine.

If you don't mind me asking, was your resection in November last year? Did you need a stoma? I have one, and it will need reversing in about three months, and then they've advised me not to get pregnant (like it's that easy) for a year! Another delay!

Another nosey question, what was your first period like post surgery? I'm late on and a little scared of what it might be like.

Take care

Katie

[Jolene2905 in reply to Katie1980]

Hi Katie, yes the resection was last November, I was lucky and didn't need a stoma although met the stoma nurses quite a lot in case I did, I was a few days late for my first period and it was fine, so much less pain than normal , going to the loo was pain free and I would say my soon has 90% gone, probably just feels like a normal period now ! I am super worried about being pregnant having just had this op but my doc assures me it will be fine, how are you getting on with the stoma? When was your resection xx

[Katie1980]

My resection was only three weeks ago! I only had the flexi sig on the Monday and had the surgery on the Thursday, so the first time I really understood and realised that the bowel resection was likely was in the pre-op meeting on the Thursday morning. My consultant had warned me it was a possible outcome, but I think I thought it was worst case scenario.

Five and a half hours of surgery later, I woke up to find my stoma! I'm coping ok with it, but in my head am working to a three month plan for reversal. My appointment has just come through for my first consultation with colo-rectal for over three months after my initial op, and I am chasing to have it moved. I know I'm being impatient, but every month this goes on is more time I'll need to wait to progress to IVF etc.

[soph86]

Hi im wIting to have th exact same operation as you. Im so scared!iv been told i will need to wear a bag to let my bowel heal. Iv been in nothing but pain for the last 2years. Glad to see light at the end of the tunnel. Hope you ar recovering well xd

[Katie1980]

Hi Soph,

So far so good. I don't like the stoma and the bag of course, and am counting down the days to the reversal, but I had my first near pain free period last week and the difference was astounding. I've really thought about this (all the recovery time provides lots of opportunity for reflection) and I was in so much pain before. Even if this relief is temporary, or marks a reduction in what I was experiencing before then it will be worth it!

It was scary waking up to the stoma, and I was devastated, but I'm getting there now. I bought new trousers yesterday as everything I own seems to sit right on the stoma itself which is uncomfortable! Never thought I would be grateful for jeggings but there you go!

Have you met the stoma nurses in advance? I didn't as it was all rather last minute, but if you can it will help to prepare you a little.

Just shout if you want to talk further, I'm happy to share my experiences if you find it useful. I found it quite tough after surgery to tell people about it, but close friends have been supportive and no one else really needs to know.

Take care and good luck xxx

[Catt83]

Hi. This post is so helpful. I have a resection in about 4 weeks and have been told I will need a stoma for about 4 months. Really worried about it. Will it be seen through clothes? Will I be able to work with it? You seem to be coping so well xx

[Katie1980]

Hi Cat,

I suppose I didn't really have time to worry in advance and am actually quite grateful for that. As I've said, I was shocked when I woke up to it, but it had been discussed as a possible outcome, I just suppose that I didn't think it would happen to me!

It's been ok so far. Clothes wise I lived in track suits bottoms and pjs for a couple of weeks, and recently went to buy some jeggings (!) as my jeans all seem to sit with the waist band directly on the stoma which is not comfortable. Ideally clothed need to sit above or below it. I've just discussed this with my husband and he said that I'm far more aware of and conscious of it than anyone else is, and that he can't se it under clothes (although if the bag is full it can lapels to a lopsided swelling under clothes!).

Some recommendations from my experience (which is all I can base it on)...

Take a number of pairs of pjs to hospital, but I found a nighty comfy for the first couple of days.

Get some trackie bottoms which are quite loose waisted for after your op.

Consider pants, my mum bought me a pack of giant, white marks and Spencer's knickers, and after I finished laughing I wore them for a week or so, as they sat over my stoma which was more comfortable than below in the first couple of weeks.

Make sure someone can be with you the first couple of days after discharge, you'll be sorer and less mobile than expected.

Get everyone to bring you sweets and goodies, not grapes (not recommended due to the skin on them). Jelly babies and marshmallows are especially good and recommended.

Have some squash in hospital and for afterwards. You need to drink lots following a stoma as you don't absurd water so easily and it gets dull!

Afterwards, I'm following guidance to avoid some foods, especially things with skins, or nuts etc which can cause a blockage. I haven't had any blockages that I am aware of though.

I also bought disposable gloves for emptying my stoma. Might seem a little OCD but I just found it more comfortable.

Hope this helps and doesn't seem too random. Happy to try to help if I can, but I'm sure everyone's experiences are very different.

Try not to worry too much, it's not as bad as I expected, though I won't pretend I'm not counting the weeks til I can start to think about the reversal.

Katie x