Bowel endometriosis and bowel resection

[vcw123]

Hi, I’m new here as have only recently been diagnosed. I’ve had an MRI and today a flexible sigmoidoscopy due to endo infiltrating my bowel. It’s also in other places too so I’m looking at surgery which the gynaecologist and bowel surgeoin will do together. Part of my bowel has to be removed and the two ends joined- a resection. Has anyone had a bowel resection previously? How did it go and what was the recovery like?

[Catness]

Hey I’m having this surgery in a few months time but can let you know what my consultant has told me about it If it helps? I’ve got to have a bowel resection with extensive work on my bladder and excision of endo in other areas so the op will be quite big.

*if* they reconnect the bowel and they find it’s leaking or there’s an issue then I will be put back under anaesthetic and will need to have a temporary stoma for around 6 months for my bowel to heal. And then obviously another op to put everything right.

I was told it was very likely that my bowel, even if it heals well, will be over sensitive for a good while (going to the loo a lot) but that this should settle down.

My consultant has told me this will be a major op and will be a lengthy recovery. He’s said around 11 months. But this could also be because I may need a hysterectomy too and I also have a number of other chronic illnesses.

All of that does sound quite unsettling BUT weirdly my mum was talking to a lady randomly and it turned out that she had the bowel resection with my surgeon and she’s been symptom- free for 3 years and said it was the best decision she made even though the recovery was tough. So that made me feel hopeful at least 😬 xxxx

[vcw123 in reply to Catness]

Thanks for the reply 😊. I just feel overwhelmed with lots of ‘what ifs’ going round my mind. I think one of my biggest fears is the stoma, even if it is only temporary 😳. And the recovery as a mum of two little people as I’ve also got to have endo removed from other areas. I guess I just have to keep in mind how awful the pain and symptoms have been and hope that life will be better after the surgery. Do you have a date for your surgery? Keep me posted with how everything goes. Sending lots of positive thoughts your way xx

[Catness in reply to vcw123]

Ahh yes the stoma thing really was bothering me too but I’ve spoken to a couple of people who have a stoma (though through different illnesses) and both have said once you get your head round it, it’s honestly not that bad. And if this op helps my chronic back pain then to me that’s worth it. I still do have days where I really would like to put my head under the sand with it all but I’ve got to the end of my tether a bit as the endo is currently impacting my life too much for me to be happy just managing it. My op is going to be in November as I need to wait until after my MA finishes as I’m expecting a pretty tough recovery. Xxx

[vcw123 in reply to Catness]

It’s great that you’ve got such a positive attitude about it, that’s probably half the battle. I hope it all goes well, I think mine will be before then so can let you know how I go on. X

[Catness in reply to vcw123]

Yes please do that will really help ☺️ Best of luck with yours, too! Xxx

[Jude2605]

Hi there I’m facing this as well. I had a laparoscopy showing severe endometriosis and recto sigmoid involvement. I am being referred to a specialist as they couldn’t do anything during lap so I’m probably for hysterectomy and bowel resection with possibly stoma. It’s so much to take in but totally explains the suffering I’ve had ! There are good support groups everywhere I’m going to go to my next local one as it’s lonely going through this ! I’ve a two year old and my relationship recently ended I think partly due to my hormones being all over the place ! Hope u get on ok x

[vcw123 in reply to Jude2605]

Oh gosh, it sounds like you have so much to contend with at the moment. I hope you’re ok. I have a 2 and 6 year old and they keep me on my toes, that’s for sure. Support groups sound like a good idea. My sister has endo, but not on the bowel so it’s reassuring to know from hearing from you all that it isn’t totally unheard of. And for some reason, because it’s my bowel, I’m less inclined to talk about it to friends and family etc 🤷‍♀️. I need to get over that really! X

[Tallulah182 Moderator]

Hi I had a bowel resection alongside my hysterectomy. I had no issues with recovery.

Mines was an open surgery so I have a scar from about 2 inches above my belly button to just above my pubic bone. Mines was an extreme case so this is why they choose to open me up my endo in thier words ' was like someone poured superglue inside my stomach.

My surgery took around 5 hours and after surgery because of the bowel resection I wasn't allowed to eat at all until about 24hrs later. I had alot of gas and took around a day to get back to the loo. But as the previous post said your bowel can be really sensitive and you end up going alot. I was allowed water only for the first 24 hours. They tried to give me lactolose which I turned down as I was ok without.

Other than that it was fine I was only on paracetamol and ibuprofen after when I was on morphine previous for the endo pain. In total I was off work recovering for 7 weeks then worked from home for 4 weeks then back to work on a phased return. In honesty tho I would say it took about 6 mths for me to feel like myself again and have a normal amount of energy.

Hope this helps and good luck with your surgery xx

[vcw123 in reply to Tallulah182]

Thanks for your message. It’s good to hear from someone who has been through it. Do you feel totally back to normal now? I hope work can facilitate me working from home after initial recovery too. Sometimes you just want the comfort of your own bathroom! Xx

[Tallulah182 Moderator in reply to vcw123]

Yes im 2 years post op and I'm feeling really good now. I know some people don't have the same experience as myself but so far so good. I felt the working from home helped aswell because I got really tired very easy.

Even when I got back into the office I did reduced hours for the first 3 weeks, I found I had to come home and sleep after a morning at work.

Best advice I'd say is don't expect yourself to be up and about straight away it takes time to recover you can't see what they did on the inside. You will want to push yourself and I got frustrated but just take it easy and look after yourself. Plenty of naps! X

[Tallulah182 Moderator in reply to vcw123]

Ps. I read the other replies about a stoma. I was also told I had a high risk of having this complication but when I came around was the first thing I asked and it was avoided. It was honestly the thing I dreaded happening but I went into the operation trying not to worry about it and kept positive with the attitude if it happened it's something I would deal with once it happened. I had a complete hysterectomy, oopherectomy and bowel resection. They also planned to remove my cervix but when I came around they advised they hadn't been able to remove my cervix due to the severity of my endometriosis x

[fishee1204]

Hello

Sounds very similar to my story. Had a lap last year which found, and confirmed with MRI, bowel involvement so I've had been seen by a bowel and gynae surgeon and having surgery Thursday for bowel resection and endo excision surgery. Both have said similar risks as the other ladies with potential stoma so will let you know how it goes.

I've been told to expect at least 6 weeks off work, depending on the extent of surgery - which is the part I'm not looking forward too as I keep myself busy to try and ignore this crappy condition but hey ho...

Good luck with your appointments and I will keep my fingers crossed for you x

[vcw123 in reply to fishee1204]

Hi, I’ve been thinking of you this week and hope your surgery went well. How are you doing? X

[fishee1204 in reply to vcw123]

Hi

That's so lovely of you, thank you. I feel too well. The surgery involved 2 parts of the bowel and 4 endo excision areas and lasted 4 hours. I was given a spinal and GA for pain relief which I think helped.

The 1st 12 hours I was quite sick, but I'm always like that after an anaesthetic so I don't think that was the surgery. I was an afternoon case so had my 1st tea and biscuits at 2am and had quite impressive (8) bowel movements the 1st day which was annoying bit a good sign apparently. I felt like I'd had an operation but felt well in myself. Had only 2 doses of oramorph - just kept to paracetamol and ibuprofen and the joyful laxatives.

The surgeons were really pleased with my surgery and how well I was and said I could have gone home Friday (day after op) but I wanted to keep a meal down before going so left the hospital Saturday lunchtime.

Since home, I'm able to get dressed, letter around, sit in the garden and feel generally well. I'm taking my regular general pain relief spread evenly throughout the day and feel good.

I have surprised myself at how well I have felt. After my laparoscopies I felt so drained I couldn't get out of bed for a few days but I've honestly felt well.

Got followups with both surgeons as didn't quite go to the plan of have the op and all will be well. Both have talked about further investigations so yet again one op leads to more doors to the unknown but things are never straight forward - haha.

I hope this has helped. I had my surgery last Thursday PM and my tummy is back to where it was before my surgery (swelling and bloating now gone).

I wish you well and hope you have a similar experience. Thanks again for thinking of me xx

[vcw123]

Oh gosh, Thursday?! How are you feeling? I’ve not even had a lap yet, just ultrasound, MRI and yesterday’s flexible sigmoidoscopy, which definitely confirmed it’s in my bowel. The MRI showed it on my uterus and I think cysts on my ovaries too so I’ll have excision too. I’ll know more after my meeting with both surgeons. Are they doing yours laparoscopically or full incision? I’ll be thinking of you all day on Thursday and I hope it goes reallly well. Do let me know how you get on when you’re well enough xx

[fishee1204 in reply to vcw123]

Only just seen this so I'll add to it.

I was terrified but relieved as I just wanted to feel better.

I don't envy you the sidmoidoscopy - I only had bowel prep prior to surgery...

They did mine laparoscopically. I have 4 ports. I call it my compass. North and South I'm more aware of, east and west I'm not even aware of until I accidentally rub one.

I also got the threat of stoma, he said it was a 2-3% chance but didn't need one. The bowel surgeon did a disc resection of 1 part and shaved another as they found 2 affected parts during procedure x

[Hidden]

Hi, I am also facing this surgery, in a couple of months, all being well. Like you and everyone else has said one of my biggest fears is around having a stoma, but I'm meeting with the bowel surgeon in a few weeks so hopefully will feel a bit more informed after that. I haven't had a previous diagnostic lap either, as again like you I was diagnosed via flexi sig and confirmed endo with biopsies - I havent come across many others that have been diagnosed in this way, so it's good to 'meet' you! Xx

[vcw123 in reply to Hidden]

Thanks for your response, and I’m so glad to have ‘met’ you too! I was starting to think it was just me as I couldn’t see much on in forums about bowel involvement.

Has it taken you a long time to get diagnosed? This all only started happening for me last August, although they think I’ve had endometriosis a long time, but masked by two pregnancies and taking the pill etc. My sister has endo and my mum had a hysterectomy when we were little so they said that was a red flag to investigate for endo. So in a way I feel lucky that I was well informed about signs and symptoms enough to mention/query whether it could be a possibility, otherwise I think I’d have been diagnosed with IBS or something based on my symptoms. Although my main problems were always when on my period. Keep in touch to let me know how you get on when you meet with the bowel surgeon xx

[Rbdcrlm in reply to vcw123]

Hi ladies,

Sorry to cut in and open this thread after so long. This is also how I was diagnosed with endo! I had a colonoscopy because of bleeding they suspected I had Ulcerative Collitis, but biopsies revealed it was full thickness endo instead. I have one lesion at 15cm and another at 20cm up the rectum. I have just gone on the wait list (Australia) for surgery but I'm on the higher priority wait list and should be having the surgery done within 3 months. My surgery will also be done by colorectal and endo specialists, my colorectal surgeon says she will decide on the day after seeing the outside of my bowel whether I will have a disc or segmental resection completed. I have a 2 % chance of temporary stoma and a 10-20% chance of temporary bladder failure needing a catheter.

I was just wondering if you guys wouldn't mind sharing your stories and how you both have been since recovering? Was the surgery worth it? I hope so. I'm so over the daily pain and rectal bleeding that I think I'm no longer scared of the surgery, I just want it done.

Also, if this isn't too personal, how has this impacted your fertility? I'm 28 and so my partner and I are ready to start a family, but I've just been diagnosed with adenomyosis, so I fear I may be out of luck on that side of things.

Thank you in advance and hope you are both well. Xx

[Hidden in reply to Rbdcrlm]

Hey Rbdcrlm,

I had my surgery at the end of June last year. I had a segmental bowel resection, which they managed to do keyhole and joined my bowel back together so no stoma. However, I was unlucky and developed post op complications and infection and was back in theatre 5 days later having an emergency laparotomy and colostomy. Please try not to be too alarmed by this, I really don't want to frighten you; I must stress that I was very unlucky!

Prior to my surgery I had worried so much about the risk of a stoma, literally worried myself sick, I had been told there was a greater than 50% chance, so it was a relief to initially wake up without one. But as it turned out having the stoma was not half as bad as i had imagined it would be. If I could go back I would definitely tell myself not to have worried so much about it, but I know that's easier said than done when you are facing the possibility. I had a catheter for a few days post op but no further problems in that respect. I had the colostomy reversed at the end of November and that was all very straight forward and went smoothly. Phew!

So, at the time it was a pretty horrific experience and I definitely questioned if I had done the right thing going ahead with the surgery... but in my heart, like you have said, I knew I couldn't have continued with the symptoms I had been suffering and had to do something, so no regrets. Now, I would say, yes I am definitely feeling the benefit, my pain is gone, no more bleeding from my bowel, and I am less fatigued... long may it continue! 🤞

I cant really speak in terms of fertility as this was not a priority for me (I'm now 45 yrs old), and I had the mirena coil inserted, which has been great for me, but what I can say is that my tubes and ovaries looked normal and healthy despite the extensive bowel disease.

If you have any more questions, fire away. Sending best wishes all the way from the UK, whereabouts in Australia are you? A trip down under is on my bucket list! Take care for now xx

[vcw123 in reply to Rbdcrlm]

Hi, great that you found the thread and re opened it becaue it’s still relevant to me. At the end of May last year I unexpectedly found out I was pregnant. It was a big shock as the gynaecologist I’d been seeing had said I was extremely lucky to have my two children due to the extent of the endometriosis that he suspected had been there for years, albeit symptomless. He reckoned a less than 5% chance of conceiving. Fast forward 9 months and we now have our third child who is 6 weeks old. Last June, when I told the gynaecologist I was pregnant he thought it was amazing and said he’d see me in a year. So case closed for the time being. My periods haven’t returned yet but I am already dreading the symptoms returning when they do. I will have to do something but I’m not sure if my options will now be different having definitely completed our family. Would a hysterectomy be a better option for me? Would it stop the awful symptoms or would I still need the bowel surgery? I’m not sure and it’ll all need to be discussed in a few months I guess. I’ll be 39 in June and I’m not clear at all on what a hysterectomy means in terms of things like early menopause etc.

Pj74 I’m so pleased that you’re mostly fully recovered now. It must feel amazing to not have those awful symptoms and I certainly have enjoyed not having them whilst being pregnant. Although swapped for a whole lot of other symptoms!

Please keep in touch and updated about how you get on over the next few months. Xx

[Hidden in reply to vcw123]

Oh wow vcw123, that's amazing news, congratulations!! Wow what a few months we've both had since we last wrote, but for very different reasons!!

Oh gosh I hope you get to just enjoy your little bundle a while longer before you have to start thinking about possible surgery again.

What I would say though, is do your research when the time comes. A hysterectomy is not necessarily a cure for endo. There is a factsheet on endo UK entitled 'Is a hysterectomy the right option for me? Making the decision' which explains the factors to consider.

Take care for now xx

[E2019 in reply to Rbdcrlm]

Hi, I’ve not commented on this thread before.. I have only ever been onto seek advice as I find this very helpful to hear of other women’s stories - so also my apologies for cutting in! I had a lap in May 2018 which confirmed I had Endometriosis growing on pouch of Douglas (in between womb & bowel). I had an MRI following this which confirmed I also had adenomyosis. I was told I would need to have double surgery with an endometriosis specialist and a bowel surgeon and that I may have to have bowel reconstruction, a colostomy bag (pretty similar to yourself). I also had a cyst growing on my ovary so was told my ovary may need to be removed.

My surgery went ahead 13th Feb (last month) I had severe endo growing on bowels, in between bowels and womb, on pelvis and urethra - this was all removed. They had to remove a ligament and I also had to have bowel reconstruction. I didn’t have to have a stoma and I didnt need my ovary removed - my left ovary & Fallopian tube were wrapped around each other (due to the cyst) but they freed this back to normal. I did have to have a catheter but this was kept in for less than 24 hours.

This is my first week back to work, I had to stay in hospital for 4 days, the first 2 weeks were the hardest. I got really fed up but now I feel great!

I too am only 28 so understand exactly what you’re going through, I was extremely apprehensive. Unfortunately I cannot comment much on the fertility part at the moment, my consultant agreed that when the surgery went ahead they would put a test dye on my tubes to test if they were blocked - which they did & this showed mine were clear, perhaps they can offer the same to you? This has helped put my mind at ease! My surgeon has advised me to try for children straight away & if not to try for IVF but not to leave it any longer than 3 months.

I wish you all the very best, I’m sure you will be absolutely fine! Good luck for your surgery & if you need anyone to talk to please send a comment back . X

[Hidden]

Hi vcw123,

I've come across lots of ladies with some degree of bowel involvement, but only one or two who have actually been diagnosed via colonoscopy/flexi sig, as it is relatively rare for it to infiltrate through all the layers of the bowel wall to the point it can be detected endoscopically.

I've also been told that deep infiltrating endo generally indicates longstanding disease, so prob had it for years too without knowing; so I'm intrigued to see what else they find in terms of endo when I have my surgery. I guess you could say I am one of the lucky ones in that I haven't suffered years and years of debilitating pain like some ladies, but then again not so lucky that it has only now presented itself at such a severe stage and facing such major surgery 😕

My 'red flag' symptoms started just over two years ago with cyclical rectal bleeding. I suspected endo based on my symptoms (and a good old google search); what followed was a number of investigations over several frustrating months under a general colorectal team, who were pretty dismissive throughout that it could be endo causing my symptoms, until they finally got a biopsy that proved otherwise.

That took me to October last year, I was then referred to a BSGE specialist endometriosis centre where I have been on the waiting list for surgery since Dec, and just got a provisional date for end of June. Are you under a BSGE centre too? I'm guessing you are with you saying the gynae and bowel surgeons will be working together...

Anyway, happy to keep in touch for mutual support, hope you're not waiting too long before you get to discuss things further with your surgeons, I will update when I've seen mine! Take care.... xx

[vcw123 in reply to Hidden]

Thanks so much for your reply. It all sounds very familiar and like you I feel lucky not to have had the debilitating symptoms for years. My symptoms started last August but only for two days. Same again in September- so cyclical like you. I went to the GP in October and they started to consider inflammatory bowel disease. I still wasn’t thinking endo at this stage either but had a lightbulb moment (also after a google search!) and went back in January. They referred me to gynaecology. I’m not under a BSGE centre, after waiting for my initial appointment, which still hasn’t arrived, I accessed private health insurance through my husbands company. I feel very, very lucky and also embarrassed that I was able to do that as I know that isn’t the case for most. So things are moving quite quickly. I imagine I’ll meet the surgeons together in the next few weeks. I will let you know how it goes xx

[Ajem197]

Hi, I was diagnosed with stage 4 endometriosis around 15 years ago after being told I had ibs for many years. After my last laparoscopy 10 years ago, they revived a large amount of endo and I was told my bowel was fused to my pelvis, but they didn't touch it as I hadn't consented. I was never referred to anyone else about it. Fast forward 10yrs and I recently had an mri and am now awaiting a laparoscopy and flexible sigmoidoscopy as they think it is now also on my diaphragm, in my bowel, and also that I have adenomyosis, too. There has been talk of bowel resections and stomas, which I'm trying not to think too much about until I have had the other procedures and see what we're dealing with. Reading your experiences has been very reassuring and hopefully we will all have positive outcomes!! 😁🤞