Bowel glued together and severe stricture in colon.

[Barnyowl]

I'm reaching out to ask about pain relief and help with debilitating bowel issues. My bowel is completely glued together with adhesions and I have significant narrowing of my colon.

Here's my story ...

I had a complete hysterectomy and ovaries removed about 13 years ago (age 36) due to stage 4 endometriosis which resulted in a frozen pelvis and extensive bowel damage.

After a long history of botched operations, I found an amazing surgeon who worked with 2 bowel surgeons and a vascular surgeon to free me from pain for the first time in 18 years. The endometriosis was also found in my kidneys and liver. I suffer from very high blood pressure (family trait), so could not go on HRT.

My surgery involved a complete hysterectomy and both ovaries removed. I had 8 years relief, but the pain has come back with a vengeance.

For the last 4 years, I've been suffering with bowel problems - excruciating daily pain, sudden onset diarrhoea, constipation and bleeding from my back passage.

I was sent for MRI scans which showed significant narrowing in my colon, so I had to go for a sigmoidoscopy/biopsies The narrowing of my colon meant that the camera could not go up there. Due to Covid, the only telephone advice my consultant told me was to take daily laxatives.

Sadly, the sigmoidoscopy left me with a severe infection and multiple antibiotics to clear and 5 weeks off work.

As Covid has progressed, so have the infections. I have been treated for 'diverticulitis' with multiple courses of antibiotics (2 weeks each time) every time I have a massive flare up (crippling pain, high temp, bleeding, high heart rate).

I have been back to see my consultant and he has told me that there are no surgical options available. Operating on a 'Frozen Pelvis' once was a major feat, they would never try again. I asked about pain relief and he said he would refer me to their pain clinic. I told him that I'd already been to a pain clinic, and they said there's nothing they can do as it's a structural problem.

He suggested I went for an enema scan to see how blocked it is. Ever since, I've been in excruciating pain, I can't drive as there's no chance of me doing an emergency stop, and I'm edging on incontinence (losing control of my bowel about 3 days per week).

It's six weeks later and still no response. My company want us to go back to work now Boris is lifting restrictions. It's completely impossible for me to do.

Any advice/help would be appreciated as I don't know what way to turn at the moment.

Lots of love to you all,

xx

[b1b1b1]

Perhaps you should get a second opinion from a very good gastro and a very good colo-rectal surgeon. It would be worth a trip to a major medical center for this. If you are in the US, there are highly regarded medical centers in NYC, Boston, The Mayo Clinic and Johns Hopkins in Baltimore.

[Barnyowl in reply to b1b1b1]

Thank you for your response. Unfortunately I live in the UK and no private medical company will cover me as it's classed as a pre-existing problem. I will do some research to find a different surgeon and ask for a second opinion. I appreciate your support.

[lilyhosta]

I really feel for you and what you have gone through..it must be awful..just dont give up there must be something out there to relieve youre symptoms...thinking of you ..take care.x

[Barnyowl]

Thank you so much for your support. I'm fed up with constantly being ill 😒 I will try and get a second opinion and hope for the best x

[silverbadger]

Hi Barnyowl, what a fantastic name. Im not sure what hospital you are under but I personally have found St Marks hospital in Harrow, London to be the best Hospital i have been to, while it looks a little tired don’t be fooled by appearances i have found all the medical and surgical teams to be exceptional. But then they have saved my life a few times, both medically and surgically (6 major operations), when every other hospital declared that there was nothing else that they could do. They specialise in the digestive systems, actually I don’t believe they treat any other sort of conditions that are not related to the bowel in some way. St Marks is a national Health hospital and one just needs ones doctor to do a referral. I live on the south coast and although it is a complete ordeal for me to travel that far I wouldn’t now go anywhere else. This is the link to the NHS website if you want to find out a little more and it has a link to the hospitals main website.

nhs.uk/Services/hospitals/o...

[Barnyowl in reply to silverbadger]

Dear Silverbadger,

Thank you so much for your response. 🙏 it sounds like you have been through the wringer too and I’m sorry you have so much too😢 I need my life back, if I was an animal, the vet would have humanely euthanised me by now! Your message has given me hope and I thank you immensely. I will try and make an appointment with my GP and try to organise a referral. Take care and big hugs xx

[Hily in reply to Barnyowl]

GP's have no idea. You need a gastroenterologist. Where are you roughly? You have St Marks, are you in the Midlands? North east or west?

[silverbadger]

Thank you for your kind words, and big healing hugs to you xx