On Monday 12th February I had to have a flexible sigmoidoscopy on my remaining rectum and sigmoid colon. To say I was nervous is a total understatement...I was petrified! I remember having this procedure done before my ileostomy about 7/8 years ago but this still felt like the 'unknown' to me. I thought I would share my experience of having a flexible sigmoidoscopy talking about the preparation and what happened on that day for anybody else who may be in a similar position and face their first 'scope' since their stoma.
Bit of background
I have had my ileostomy since 2012 that was initially a loop ileostomy due to my bowel not being able to function at all. I had the surgery when I lived in Bristol and they left the large bowel and rectum in situ. Since then I have had 8 refashion surgeries on my stoma to fix the prolapse and it is now an end ileostomy. At the time they were concerned about removing the large colon and rectum due to my complications and so they decided to leave it where it was. At that time I wasn't having too many problems with it.
However, for the last 3 years in particular, I have been getting recurrent sepsis (9 times) but we still have been unable to find the source of the sepsis and sepsis symptoms. I had a feeling the last time I had sepsis that it could be the remaining large bowel when the results of my urine sample came back as clear.
Over the last year from my back passage I have had; increased bleeding, smelly mucous, weight loss (especially during the last 6 months) and left-sided stabbing pain. Due to the nature of my rare disease and how it has affected the bowel I cannot have a mucus movement without digitally stimulating it because the peristalsis does not work and it would not come out otherwise. This is hard to admit and this is the first time I have since writing my blog.
When I went to my GP and explained about my side effects I was referred back to my colorectal surgeons. An emergency appointment was giving out due to my symptoms. Within a week of getting the letter I had the investigation.
A lovely nurse called Nikki spoke to me and she really put my worries and fears to rest, I told her I had 2 stomas and asked about the prep. She sent me an enema and a pack with all the instructions. She explained the procedure and I felt she really listened to me and understood my anxieties. After the phone call, I felt a bit more relaxed whilst waiting for Sunday to arrive.
I was given a big pack of information containing: directions, consent form, questionnaire and a Fleet enema. I read through all the information a few days before especially regarding food. I was not allowed to eat anything solid for 24 hours before my investigation. My appointment was at 9 am Monday and I was allowed to have a light breakfast on Sunday 9 am but nothing solid after this. There were suggestions of having minestrone soup (strained), clear jelly, boiled sweets and other ideas. For once I followed the instructions and as I was getting hungrier and hungrier during the day I suddenly thought....’I have an ileostomy, so maybe these directions do not apply?’ Due to the department being closed on Sundays and I couldn't call I didn’t want to risk it so I decided to stick to what the letter said. I was hungry Sunday night and I was a bit moody (sorry Steve).
The morning of the investigation
I woke up at 6.30 and at 7 am I had to do an enema to clear any mucus. After I did this I got ready and waited for my carer to come pick me up.
As I was waiting for my lift I realised actually how scared I was. For 6 years I have not passed a solid movement and to suddenly think about having a camera looking at my insides made me feel a bit strange. I was concerned that it would be painful and I would be unable to tolerate it. When I am nervous I talk incessantly about rubbish and I think I did this all the way to my appointment.
We went to the Endoscopy unit at Bournemouth Hospital and I filled in my questionnaire. My carer was not allowed to stay with me and I moved on to the next waiting room alone.
A lovely nurse called me to go through the questionnaire and to admit me for the procedure. I blurted out my history and told her about my stomas and that I was slightly anxious. She listened to me and really helped me feel at ease. When the nurse had to canulate me I explained about my veins not being great and on the second go I suggested a vein and we got it in. After I had signed my life away she went through the consent form and all the things that could go wrong (during this ‘hold music’ came into my head I tried to listen but I did space out slightly when she went through the list). I was all ready to go armed with my wristband, canula and consent form, feeling happy that I did not have to wear a hospital gown.
I sat in another waiting room and starting chatting to a lady who had Crohns disease. It was nice connecting and talking. It wasn’t long before she was called for her procedure and I was called for mine.
I was taken to a room with about 5 people in there, with one of them being a surgeon I had already met many times during my admissions. He asked me a few questions about my history and I told him about my symptoms particularly the weight loss and blood and also about my thoughts on the bowel being the source of sepsis. He listened and said he would have a look. He is such a lovely man and asked if I would be Twittering my experience, which made me laugh!!
I lay on the bed on my left hand side. For comfort, I decided to attach my night bag to my urostomy so there would not be any leaks while laying on it. I was introduced to the team which was a nice touch plus it made me feel safe and in good hands.
The surgeon explained to me that because my bowel and rectum had not worked for 6 years that this may be more painful than normal and they may have to finish the procedure under General Anaesthetic another time. I told him I would try my best to persevere and asked if he could go a bit further up my descending colon because this was where I was getting the pain. I was told that he would try and see how far he could go depending on how much discomfort I was in.
I had requested earlier that I would like sedation and this was given without question. Once this was administered I was hit with the Fentanyl wave and soon I stopped chatting and felt sleepy. I tried so hard to stay awake and see the screen but this didn’t happen. The last thing I remember is some pain when the camera was inserted and that was it until I woke up in recovery.
I woke up and I instantly had that old feeling when you go out drinking the night before when you wake up not remembering the night before and the dreading doom of what you said or what happened! I couldn’t remember the procedure and I starting to worry what I said under sedation! I was uncomfortable and in a bit of pain, so I had some IV Buscopan and this did help with the cramping. I felt quite sleepy but soon I was asked to go to another room where I would have a cup of tea and a sandwich.
I very gingerly walked into this room and was met by a smiling nurse and a room full of patients who had similar procedures. My carer was also able to come and sit with me which was nice. I had my tea and sandwich which tasted amazing! I was also told that I could have eaten Sunday because of the ileostomy and the letter was a generic letter but I decided to be cautious anyway.
Before we were allowed to go home a nurse took us into a side room and started explaining the findings.
This nurse was fantastic and explained everything. I threw a lot of questions at her and soon I realised she had worked on a surgical ward and knew a lot about stomas. She explained that the surgeon managed to go up to the descending colon and it was full of colitis. My report says ‘disuse colitis’ which is the same as ‘diversion colitis’. The nurse explained this in detail and I pointed out the ironic nature of my body. I have an ileostomy, not due to IBD and now I have ‘diversion colitis’ in the remaining large bowel and rectum.
She explained this is the reason for all my symptoms but most importantly that this could possibly be the reason for my recurrent sepsis. When she told me this I felt a bit emotional because it has been hard having the recurrent sepsis not knowing what the cause was.
Now the plan of action is to see my surgeon in outpatients and talk about management. I would like it all to be removed and to have a Barbie butt (total proctectomy) but there are a few complications so I will wait and see what is suggested. I have been offered before to go to St. Marks Hospital for a consultation regarding my ileostomy prolapse but I refused this back then. If this gets offered again I think this time I won't refuse and I will see what the specialists say.
I am still a bit sore but I am so glad I went through the procedure and to have a potential answer for my sepsis drama. I am also relieved it wasn’t anything sinister and hopefully this will get sorted and removed. I will keep you updated on the treatment plan.
I was extremely nervous and anxious about this procedure. I realised that when you have a stoma you become an expert in your bodily functions and when somebody else is in control of your body it can be quite hard to hand the reigns over. I had excellent care and I told them my concerns and anxieties which seemed to help. If anybody reading this is due to have this procedure tell the staff about your concerns if they know they can help make this easier for you.
If you still have your large bowel and rectum in situ it is important not to forget about it and to have regular scopes. This was my first time in 6 years and I wish I had thought about it earlier. My surgery was not done at Bournemouth and due to all my other complications, we have forgotten about my large bowel. Hopefully, this will be able to be removed and the dream would be not to keep getting the recurrent sepsis.
I would love to hear from you if you have had this procedure or are due to have this for the first time with a stoma?