How I fought my doctors to give me the surgery I knew I desperately needed

I had been suffering for sometime with Inflammatory bowel disease and the after effects of my J-pouch surgery before I started to get pain again.

I had just moved house with my husband and 8-month-old baby to a new area completely and was heading back to work after my maternity. The pain would happen out of nowhere and literally took the wind out of my sails.

So like anyone I went to my new GP surgery and told them my (at the time) 17-year-battle with Ulcerative colitis and pouch flare ups. She looked at me and literally said: “Well I doubt it’s anything related to that, just take painkillers”. Now don’t get me wrong I’ve had some shit Doctors but some really helped me.

This went on for a month or so before I had enough and requested a scan. She relented and booked me in for an ultrasound; when it came around the sonographer checked my ovaries, kidneys and liver. The only thing he noticed was a tiny cyst on my kidney which he said shouldn’t be causing me any pain at all.

I gave up with the Doctors for 6 months and just focused on losing weight and toning up in the hope that it might help. I had an amazing GP for a few months who tried everything she could think of, she even came to my house and picked up a prescription for me – well I kinda stole it but I did pay for it a few days later.

Within a couple of weeks of that I ended up ringing 111 in crippling pain, they didn’t hesitate to ring an ambulance.

My husband works 30 minutes away and I knew I couldn’t take my daughter with me; I was very lucky that a neighbour agreed to watch her until my husband returned – home which was pretty lucky because I had been gone 10 minutes by the time he got there.

I remember screaming in pain whilst in the ambulance; the paramedics were awesome and did really well to try to take my mind off things.

Once booked into the A&E department my fight started. I waited 2 hours before seeing a doctor but saw plenty of overrun nurses. Two were particularly amazing, they gave me morphine which unfortunately didn’t help as I was so bad. Shift change happened before they could come back and give me more, but I wasn’t the only person in there and god knows if people were worse.

They asked what I thought was wrong with me and I simply replied ‘Pouchitis’, I got a couple of looks of confusion but they soon came back after talking to a specialist and said they had made a “telephone diagnosis” of Pouchitis and I was to stay in at least overnight for observations. Steven, my husband, obviously couldn’t come sit with me and I had rung my parents to keep them in the loop if they were needed to babysit urgently. I spent 4 hours in A&E before being moved to an assessment ward, the next thing I know my mam is with me, and she remained with me for the next 2 hours.

I was moved at 2am to another ward where the nurses that dealt with me were bitches. Point-blank.

I was scared, alone and really didn’t need this shit. In the morning I was moved again and saw the ward doctors who had been told to discharge me without seeing anyone.

Now this young doctor took one look at me and my notes and refused to discharge me until I had had a flexi sig (camera up) and seen the Gastroenterologist. Finally someone on the wards willing and wanted to do what they trained for and not be an arse about it. He couldn’t believe they had made a telephone diagnosis – he said things like that you need to see inside.

Another ward change and I eventually saw the Gastro, He said the scope proved the Pouchitis and I was to be put on antibiotics and reviewed in 2 months. That appointment was a new antibiotic due to no change and a review in 2 months. By that point I had decided enough was enough, I was going in for surgery. The Gastro literally ended the appointment and said your referral will be with you in a month or so.

‘Month or so’ my ass! I rang the Gastro’s secretary and was told that she was doing it that week. Fair enough. I rang the next month and she was so rude and nasty I actually ended that call crying. 1 month later and nothing so I just thought stuff it I’m sorting this myself, I was sick of waiting. I made an appointment with a new GP, told him what was going on and literally there and then he emailed her with from what I can gather was very strongly worded! Especially since I got an appointment the next week.

The surgeon I saw was a complete tosser. He told me there was a lot of anger behind me and he didn’t think I was mentally strong enough to have an ileostomy after 10 minutes of speaking to me. I mean who the hell does that? Granted if you work on a psych ward maybe.

I remember just saying he needed to refer me to a surgeon who I trusted and wasn’t a jerk.

However the day that letter arrived I had been admitted again and made to starve by my now favourite doctor (yep just because I think you rock doesn’t mean I forgot you made me hangry TWICE) but allowed home by my trusted surgeon on the agreement I came back for all the necessary scans; as he would need to fight the board of directors to make sure I got the permanent and not the temporary ileostomy.

Three scans/tests later and my trusted surgeon told me I was allowed to have the permanent because my pouch was so inflamed and poorly. I remember him also saying before he got the results how anybody with a toddler can’t be told they aren’t mentally strong enough!

I was admitted at least once more before my surgery and that was due to the pain being so bad I wanted to drink my bottle of morphine and just go for a walk. I’ve suffered with depression and anxiety before but never felt like I wanted to die. If I didn’t have the medical team I did towards the end I probably would have, I can’t bear to think of that now as I watched my daughter turn 3 on the weekend and celebrated 5 years of marriage.

Moral of my long winded story is stay strong, you do matter, find those who will help fight for you and your well being, but more importantly never give up the fight for YOU.

Words by Stephie Simpson

Author: Stephie

Hi there! I'm Stephie. I'm 30 and just had an Ileostomy after suffering with Ulcerative Colitis for 19 years and 8 years with Ileo-anal pouch. This is my space in the vast existence of the Internet to talk about my experiences on my journey to getting my life back!

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