Gynae talk: Periods, Less Organs & Having No Bum After Surgery

August 2011 was when I had my panproctocolectomy. This was when surgeons took away my large intestine (colon), appendix, rectum & anus & formed my ileostomy. Because of those things being taken away and my bum being medically sewn up (where the hole used to be), this means my ileostomy is permanent.

I wasn’t a candidate for a J-Pouch (internal pouch) or a temporary ileostomy because of a few reasons. My Crohn’s Disease was severe and had stopped responding to treatment and during surgery, a large benign tumour was found, the size of a watermelon, I was told. These things led to severe blood loss during surgery and it was very touch and go. Thankfully, I pulled through and my surgeons saved my life, but I was told this was by a matter of hours.

Let’s talk Phantom Rectum Syndrome

Having organs removed is a big thing to get your head round and a lot of people go through a grieving process after surgery, whether this be immediately after or even years down the line. Like if people lose a limb, ostomates can also experience something called “phantom rectum” (sounds like the evil villain in a movie, right, or a ghost?!)

Phantom rectum syndrome can range from a pressure or tingling sensation where the hole used to be before your bum was sewn up, or can sometimes cause pain such as shooting pains too. For some people, this can die down several months after surgery but for others, this can impact them years on in varying degrees. It’s important to get this checked out if it gets worse to check there is nothing underlying making it worse.

The wound on the outside of my bum after surgery can take a while to heal and can be uncomfortable to sit down on for a good few months, but I found actually sitting on my bum and bearing weight on it (on a comfortable post-operative, medical cushion the hospital lent me) actually helped speed up the healing process and this was advised by my surgeon. Always go by the medical advice you receive. I also found sleeping on my side much more comfortable and couldn’t sit like I sat on the hall floor in assembly at primary school for more than several months post surgery as it honestly felt like my wound was about to snap.

Even after the external wound had healed, the inside was still healing such as my internal body tissues. This healing can lead to a sensation where you feel like you need to poop out your bum, but obviously, you can’t. Even though your rectum has been taken away, nerves are still intact which is another reason why this can occur. It often comes in waves and feels sometimes like something is itching at my non-existent rectum or sometimes even a hot poker suddenly fancies a prod up there!

It’s quite bizarre and to this day, I’ve found the things that help it the most are a warm bath, sitting on the toilet (my brain probably feels like I’m going if I do this), walking around & taking Buscopan. I had been offered nerve blockers from the GP, but only want to take these if it’s absolutely vital as my experience on them hasn’t been great, especially mentally. Distractions are sometimes a good help, but it depends how strong it is at the time. I usually only experience Phantom Rectum when I’m nervous or during my period.

Periods and Birth Control

Before surgery, I had been on birth control such as the pill which meant I had my period based on when the pill determined so. Leading up to surgery, I came off the pill and then after surgery, had Nexplanon (the arm implant) and the Depo injection a year or so after. My periods were not regular or in any pattern at all after surgery, which was quite understandable after the trauma my body had been through, especially in my pelvic region.

From my own understanding, periods after surgery are different for the individual. Some people can get theirs between 4-6 weeks after whereas others have nothing for months. Periods may be heavier or lighter than before surgery and it goes without saying to ask for medical advice if you have any questions or you’re worried.

I’d like to say before this next part that just like most things in ostomy life, you guessed it, periods and birth control after surgery don’t fall into a “one size fits all” criteria, so this is from my own experiences only. Always practice safe sex and always use protection if you don’t want to risk becoming pregnant.

Nexplanon

The arm implant I really struggled with the second time around, when I began the relationship I am in now. I’d previously had the arm implant (Nexplanon) for 3 years as is typical then got it again because I could no longer take the pill after ostomy surgery as I was told it would be ineffective because of my body not being able to absorb it properly, and, to be honest, I didn’t have the mental strength at the time to try anything else.

My second Nexplanon then went in and I experienced vaginal tearing in sex which understandably made me dread getting intimate, which then started another vicious cycle because I’d markedly avoid it, then because it was happening less, tearing was happening more. Sexual aids such as lubricant didn’t help and then because I was anxious, this made relaxing enough to want sex near impossible. I chose to have the arm implant removed at a Sexual Health clinic because (typically me) things weren’t straight forward when the GP tried to remove it. This wasn’t the worst, but by far wasn’t the best medical experience I’ve ever had, but it finally got taken out about a year and a half into my second arm implant and left a scar to go with it

Periods wise, it stopped my periods completely after being on it 2-3 months on the first one and I can’t remember if I experienced a bleed between implants. It doesn’t stick in my memory so I’m guessing not.

The Depo Injection

I then decided to try the injection after discussing options with my GP. I had to have it every 13 weeks and the injection works by releasing Progestogen into your body at a level high enough to avoid pregnancy. I was also told to avoid the injection if I was planning on falling pregnant within the year, but this wasn’t planned at the time so this didn’t impact my decision. The injections were always done in my bum cheek and were very easy to fit into my life with the appointments every 13 weeks.

The injection markedly impacted my mood swings more and more over time, leading to severe and very scary mood swings which definitely impacted my mental health, as well as my relationship. I still experienced vaginal tearing and my periods were all over the shot. It also gave me headaches and definitely decreased my libido. Having had my libido often impacted my birth control and my mental health, it’s definitely been a struggle and something in the difficult times that I tried so hard not to beat myself up over.

Thankfully, my now husband has been very patient and understanding through it all and I haven’t been on any contraception besides using condoms for about 4 years now. This has definitely been the best and most healthy I’ve experienced both my periods and sex life.

My periods now

My periods now are usually like clockwork and thankfully, really regular! Better late than never, right? I actually feel the best I’ve felt hormones wise and with regards to my sexual health and libido and I firmly believe a lot of that is down to letting my body do its own thing in the end 4 years ago and just letting things be natural, with no chemicals or hormones added to the mix with side effects.

Unfortunately, every third or fourth period, I suffer especially with very bad cramps and very heavy flow for the first 1-3 days, but a lot of the time it is manageable thanks to paracetamol and using BeYou period patches.

I have a lot of scar tissue in my pelvis from my major surgery and one side of my ovaries is very matted from this. This is common after such major pelvic surgery and can affect people to varying extents. I’ve had internal and external ultrasounds and also gynaecological appointments and investigations to look into this but I’ve been told it’s all from scar tissue from my surgery.

Cervical smears and organs falling back

Cervical smears since surgery haven’t been the most uncomfortable procedure but they can definitely take a lot of communication and patience. I always tell the nurse that I’ve had my rectum removed and I’ve also been told that I have a retroverted uterus, which is quite common after rectum removal. Usually, the nurse gives me a pillow to place under my bum to make the procedure a bit easier on both counts!

This is where the uterus tilts backwards instead of forwards at the cervix and can either come with no symptoms or symptoms such as painful sex, back pain and painful periods. To find out more about this, you can read this article. I do suffer with back pain and painful periods and I find that using a pillow during intimacy to raise my hips also helps.

Please remember that everyone is different after surgery for an ostomy and rectum removal and that this is just my experience. If you are concerned, definitely seek medical advice. The online community is also a great place to speak to others who have experienced the same.

Amy @ibdwarriorprincess