It’s been a long time since my last blog! I’ve not been too well and I thought I would talk about a common issue/most recent issue I’ve been having that many of us women suffer from that is impacted by IBD and vice versa.
Since before, during and after my first diagnosis of Crohn’s Disease and Ulcerative Colitis in 2012, having my time of the month was beyond hell. I found that when I was due to come on my IBD would flare extremely and it would make my joints more swollen and painful than normal. I have also suffered from migraines since I was 11 and ever since I had my first period my migraines became much worse and more intense that i couldn’t open my eyes most days along with the worst vomiting i had ever encountered. With both of these issues combined it was agreed by my GP to go onto the mini-pill when I was 14 as the normal pill wasn’t suitable due to my migraines. This worked OK until my IBD flared severely when i was 17 and i wasn’t absorbing it some days and nutrients etc which meant that my cycle was completely messed up. For years i had this issue and iIstopped taking it for about a year before i had surgery and my cycle still never returned to normal (still to current day.)
In 2015 I deteriorated and couldn’t keep out of hospital, i wasn’t responding to steroids or the methotrexate injections and tablets. During this time i had two cycles and it intensified my anemia, pain, vomiting, migraines and fatigue. I caught Sepsis from my large bowel Crohn’s and Colitis being too aggressive and this resulted in emergency surgery for an Ileostomy which i later then named ‘Lola’! It was a hard recovery but I was up only a few hours after my surgery sitting in my chair and got home a week later (you could say I’m a pretty determined girl and i don’t give up easily!) So because everything had settled down i then tried the mini-pill again but sadly it passed through my small intestine and into my bag. With that option completely out the window I remained off contraceptive pill, then I had my first period since surgery when my rectal stump was flaring and it was agony. I lost so much blood from my cycle and my rectal stump i couldn’t keep off the toilet and I went through packets and packets of sanitary towels. Only three months later I had a second operation to have my rectal stump removed and i was up and walking round HDU the next morning- I had never felt so relieved to have it gone and my monthlies had also stopped.. so to me i reckon my IBD contributed to my monthlies.
After this surgery my periods disappeared for a few months until the end of January in 2016 and my problems started again but that time they couldn’t understand where my issues were coming from apart from my liver function being over 100 which then settled after a few weeks and being diagnosed with Hepatitis which also then disappeared. In April I was taken in for another operation to place in a permanent seaton stitch that kept causing infection and an EUA of my barbie butt and vagina and biopsies were taken. I remained on no IBD medication either as everything kept coming back fine i.e bloods and stool samples. In January of 2017 i was rushed into hospital and had emergency surgery for a perennial abscess and i was then taken in again afterwards for another operation of my barbie butt for a refashion of the wound and biopsies, an MRI scan and I was then diagnosed with Vaginal, Perennial and Pelvic Crohn’s Disease. Later from then I was diagnosed with Behcets Disease, Arthritis and had another operation on my barbie butt to try and clear all infection which also confirmed Crohn’s Disease in there too (yep aren’t I a lucky one!)
Since then I have had a few hospital admissions for sepsis, fistula infections, urine infections, my IBD and behcets flaring, arthritis flaring and my barbie butt getting recurrent infections and abscesses. Due to all these conditions my pelvis has fluid inside which cannot be drained due to my allergies to antibiotics, high risk to sepsis after surgery and how aggressive my Crohn’s is that any surgery will aggravate it and cause me more issues with fistulas as my pelvis is riddled with them. I also have no options for contraception except being careful due to the following issues; the injection causes a type of arthritis, the coil is a no go due to infection risk and going into flared tissue, the implant is also a no go due to risk of infection again and also due to the hormones that it produces which will make my migraines worse and any type of pill won’t be absorbed. My periods had also vanished again and this time i was told i would be lucky to ever have one again due to how far my disease is progressing and there is nothing that they can do except hope that the current treatment called Vedolizumab that i have been on since late January will start to work. The day after receiving that news i thought a miracle had happened- I had my first period in months!! Then my pelvis and barbie butt pain got to the point where I was unable to move or eat and it then started to bleed every time i was able to move. Blood would soak through my pads and clothes and i filled bed pans full of it, the nurses and I were horrified. I have had only one cycle since then and I was almost rushed to hospital due to losing to much blood. I woke up the morning I started and I was soaked in blood, later that day I went to let my dogs outside and when I got up my trousers were drenched in blood and it was running all down my legs. I have had a tablet that stops your cycle a few times so was advised to take it then too but it didn’t work this time, I had to somehow deal with it until it stopped.
Now they have disappeared again but I know that the next time I get them that it will be the same scenario. So now comes into the part of this blog where I share what has helped me when suffering from a problem all of us women get. I can tell you there aren’t much things that can help and what may work for me may not necessarily work for you, however trying is better than not trying! For me taking regular prescribed pain relief and anti sickness can reduce the pain and sickness that i get, a hot water bottle soothes and sometimes has helped me sleep, heat patches which you can get from Boots help loads too and loose-fitting underwear/bottoms such as joggers or pj bottoms and either a hot shower or warm bath.
I’d also like to highlight that only under 8% of IBD patients with crohn’s are affected by vaginal/reproductive crohn’s so it is rare.