Chronic Illness Blogs, Personal Blogs

IBD and Menstrual Cycle Issues

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.

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Chronic Illness Blogs, Personal Blogs

Coping With Phantom Pains  

So i know that it is common for many people to have a phantom pain when something has been removed from the body and is no longer there. What really mind boggles me is why we can still feel something that is no longer in our bodies or part of us anymore and I keep asking myself “Why?”, “will it stop” or “will it happen often?”.

Doctors once believed phantom pain was infact a psychological problem, but now believe it’s a sensation that comes from the spinal cord and brain. Phantom pains happen to people that has had an arm or leg removed and it also occurs to many after they have had surgery to remove other body parts such as their large intestine, pancreas, appendix and many more! So really it can happen at any time in your life, even after ten years of feeling nothing, one day it can happen! Your body has grown with these parts and even though you know they are gone your body can take a long time to adjust to this.

Anyway, Today is what i call ‘Phantom Day’. A day of feeling that you have to poo but you can’t because once you have been sewn up (known as ‘Barbie Butt’) it’s actually impossible to! Many who have temporary stoma’s, feel this too and pass mucous which is the body’s natural lubricant produced in any part of the intestine. On these days i feel the pain of what i once had when i had a bum or rectal stump or when crohn’s and colitis decided to show it’s presence. Like many others, i thought this was impossible and getting your head around it can be challenging..Fear not! If you are reading this and feel that the pain you are experiencing doesn’t make sense, why you have this terrible feeling, cramping, spasms and heaviness i want to tell you that you are NOT alone. It may feel like things aren’t getting better but they will, only the timing is uncertain.

If you have pain relief, take it. You may feel woozy or unable to do things due to tiredness such as cancelling plans with a friend however you come first. If you want to have a bath then you have a bath! who cares about that sibling or flat mate who always wants the loo when you decided to have a soak? You time is so important when experiencing Phantoms days, days of pain or simply pure exhaustion. Who cares what people think if you want a day in bed with icecream and netflix? People will judge you no matter what you do and you can’t control their perspective on things, but you can help them understand why if they are willing to except how you are feeling.

I have been reading a great book this week called ” The Life-Changing Magic of Not Giving a F**k” by Sarah Knight and i can tell you now, its brilliant. I’m not even half way through and already i feel my view on people in life is some-what different! A great line i quote from the book..”There are two reasons you tend to give a fuck about what other people think: one, because you don’t want to be a bad person, and two, because you don’t want to look like a bad person.” It explains that not giving a hoot about what people think is right but doing it in the right ways is so important. It is priced at £12.99 british money and is available on Amazon or in Waterstones book stores.

If you are struggling to cope with any type of pain or coming to terms with life then i highly suggest picking a hobby you are able to such as reading, colouring in adult colouring books or walking. Do what you want to do, when you can and don’t be forced to go out for that one drink because you don’t want to let friends down, if they love you they will understand. Love the life you live and live the life that you love. 💜

Personal Blogs

Recovery from Barbie Butt Surgery

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The above picture is me recently with my Mum 😊

Hey everyone! I haven’t been on for a while so i thought i’d share with you my past few months!

Shortly after my last post, I received surgery to remove my rectal stump (also known as a Barbie buty) and it was a great success, untill i got a very bad perineal wound infection. I was readmitted and given antibiotics five times a day with three different kinds in which it made me very sick and weak. I was then given something stronger which i had an allergic reaction to and i almost died. I had a lot of health professionals around me, pumping it out of system with many things and awaiting for my fever and heart beat to calm down before my body went into serious shock, it was pretty scary!! They managed to find a balance of antibiotics and after a few weeks i was up and starting to heal! When i got home, the guy that i was dating decided to leave and end things between us because he was fed up of ‘me sleeping and relying on medication all the time’ and couldnt deal with me not only being ill but the hospital admissions and having an Ileostomy. It’s taken time but things are looking up and i have never felt better to be on my own and to only rely on myself!

I have celebrated my first ever christmas at last! I still have a great support network around me full of friends and family, i couldn’t be happier! I also turn 21 on the 5th of January and have my very first Foam birthday party booked and planned!!! I am so excited and can’t wait to make my birthday a memory to never forget! Of course, it does feel extremely weird for me as i feel i should be celebrating my 18th as I missed that due to being so unwell and on the toilet constantly.

I like to think that when something bad has happened or is happening, it can only mean that something better and good is waiting for you! A very wise and lovely lady who has helped me so much this year once told me ‘bad things are only temporary and only last a little while untill something greater appears’. I hope that if you are reading this and in a bad place right now, i cannot emphasise to you enough that is not forever and your time will come! Have hope, keep fighting and stay strong because in the end it comes down to us alone to keep going and NEVER quit!

Chronic Illness Blogs, Personal Blogs

Preparing for Surgery!

So today the Stoma Nurse, Christine came to see me to tell me everything i need to know about my Stoma and marked me with an ‘x’ under a water proof covering on the right side of my stomach for the surgeons to place it there when i go into theatre either Wednesday or Thursday. The surgeon came to see me earlier this morning around 8am and i had only had 4 hours sleep, however i kept focused and he answered pretty much every question i was thinking of. My stoma will be permanent and will stay with me for life, i have been put on antibiotics as they suspect i have Sepsis (septicemia) in the large bowel which would explain why i have been feeling so unwell. These past two days i have had the worst migraine in a long time and is making me feel so much worse than i am. The doctors and nurses have said today that the surgery will make me feel so much better, whilst i will be sore and ill but in a totally different way. Tonight i just feel terrible and my temperature is higher than normal, i feel cold and hot at the same time and not even sure how that is possible! But now is the time to start preparing myself for surgery and getting my life back, its a long road ahead but i have suffered with this for much longer so i am hopeful i can manage it! I really want to start creating some stoma bag covers when i get better too so that along with getting better to be by my boyfriend and friends and families sides is two great goals i have set myself to work towards in getting better (if that makes sense?!) This is more than likely my last night on ward 104 at ARI and i will be sad to leave this ward because i have got to know such lovely people who i would also consider as another mother or a good friend. They aren’t just nurses and doctors here, because i have been here so much this feels like my second home and my second family (who in their right minds says that about hospital right..!?) i will then wake up to be in the ITU ward then move along to 502 surgical ward after a few days. I am not going to lie i am really nervous about this as it is HUGE change for the rest of my life, but i am also really excited.. one reason why is because the thought of never having to spend hours on the toilet in agony with the hot sweats is like heaven to me. Some people want material things, or a new car or a new home and i know we can all agree we’d love to wish someone back to be with us for one more day.. my main wish and want in life is to be able to live the life i was meant to have, to have a purpose. Most days i wish i could ask for a new body and some days i wish i wasnt here so the pain wouldn’t be with me but then i think to myself, i do have a purpose and i will get my life back one day because i have faught this for so long that my purpose in life was to be a warrior and to help others who too like me wish to have their lives back, but not only for me. I want my family, friends and boyfriend to have their lives back too.. and to enjoy that experience together. After all life is what you make it, right? 🙂 I know i will still have down days and happy days like every other human being and it is only natural. I have great support and this is the first time in my life i truly feel properly in love with someone who gets me, who is accepted by both friends and family the connection between us all is great! As bad as things are, i couldn’t wish for more better people in my life and i am very lucky to have the things that i have (although i still want more and more minions things i am minions CRAZY!) but that’s just me, we all have things we enjoy in life or a weird fantasy or obsession and i think thats what makes us an individual. I still can’t really say how i am feeling i don’t really know that myself to be honest with you all. All i know is im tired of being tired and sore and sick and weak, i have set myself goals and now what i need to do is stay positive and try not to worry too much which is easier said than done. I know i can get through surgery and i only want one anesthetist to put me to sleep and he is great his name is John Irvin or Irwin, he is by far honestly someone i would recommend to anyone in ARI! It’s now time to have some phonecalls with my boyfriend (Freddy) and family, take medication and get ready for bed. I hope i can sleep tonight! I can’t wait to see Freddys mum tomorrow and my mum wednesday or thursday! If anyone would like to give me some advice please feel free, i will not say no!

Alannah x