It's been a rather long time since I updated. A lot has happened.
Firstly, R has fitted in well with our family, I honestly believe it is easier going from 2 to 3 children than it is 1 to 2. It is like he has always been here.
R stared crawling at 5 months, standing at 8 months and is started walking at 10 months. 'Mama' was his first word and now he says 'mama baba' when he wants to nurse :)
But it has not been easy for me. I was aware I was high risk for developing PPD and I did not escape this time. Not for reasons related to parenting though. I have Crohn's disease and since May I was flaring severely and had 2 hospital admissions.
R was about 6 weeks old when I noticed my health declining, I (as is common with incurable diseases, especially in the first years) thought I was bigger than it and could cure it with diet... yeah, cure an autoimmune disease with food... it didn't happen obviously.
I looked into the GAPS diet, it seemed fantastic! The reviews are great, so I went out one week and spent over $250 on food from the list.
I thought eating healthy would help so I put off seeing my doctor. Since moving back to South Australia I was without my GI and really had nobody to go to. My old GI started working somewhere else so I put it off... Hoping, praying to the universe that my gut would heal.
By May, I was very sick. My fiancé had enough of seeing me suffer and was worried about me so he took me to the hospital where I found out I was really, really sick...
My Crohn's was diagnosed in 2009, after 2 years of mild flaring. I had my daughter and then flared up badly, my liver was affected and I developed severe inflammation in my gallbladder and gallstones. I had surgery at 5 weeks PP and honestly don't remember much more. I started getting sicker, and sicker, scared out of my mind I had cancer because I was bleeding... So I went to the doctor.
I was put on 6MP - an immune suppressant drug that supresses bone marrow production. I never got to the point where I was ok, my inflammation markers only got as low as 8. But it was apparently ok with my doctor.. after all, he wasn't the one suffering....
I had my second, a son, I was monitored my entire pregnancy, every few weeks we would check all my bloods. I was fine, pregnancy is good to me...
After I had my son, I was better off than I was after my first. Crohn's tends to flare up about 6 weeks after birth because the immune system is no longer supressed for the pregnancy. I continued my care until 10 months PP when we made the decision to move interstate.
I was at the point in my life where I got used to a bit of pain, and the other symptoms such as vomiting and diarrhoea. I didn't eat takeaway food which helped... fatty foods are a trigger. We decided, while I was healthier than I had been in years, to have another baby. Baby R.
I was almost perfect during my pregnancy, I avoided my triggers and things were going well. I gave birth to a healthy 8lb boy after a easy but emotionally 'difficult' unassisted birth (I will elaborate on this next entry, I do not regret freebirthing and would do it again without a second thought)
We moved when R was 5 weeks, back to SA. I was depressed, we lost our home in the flood due to the cyclone and I was beginning to flare. Life was only just beginning to test me.
So, to where I was in the beginning. I tried to 'cure' (not possible) my disease but I just kept getting worse. The pain was severe, I cried all day every day and considered suicide often. I was trapped in a body that was failing me. I could feel myself getting weaker. Weeks went by where I refused to see a doctor, I was extremely uneducated about Crohn's, my doctor never gave me any advice besides - Google.... yeah, thanks Doc...
I started getting dizzy spells, I couldn't eat or drink.. I was like a zombie.. just existing and breastfeeding... I went from 65kg to 55 without trying. I started vomiting and pooping blood.
My partner took me to hospital, he called ahead and told them what he was observing and the nurse said to come in immediately... and to call an ambulance if I was to drop... so I got scared...
We went in, less than 15 minutes in an extremely busy hospital I was in my own cubicle and they were taking blood, putting in IV's and doing all sorts of scans. And it all went crazy from there.
I mentioned being able to have R with me this stay, but it was not without a fight. I had administrators coming to me asking if there was any way R could go home, if we could consider feeding him expressed milk, if my OH could take him to me from 8am to 8pm so he could nurse... but he was only 5 months and had a cold which became bronchiolitis. He needed me. They tried transferring me to another hospital but none had any beds. The women's hospital would not take me because I was only breastfeeding... not pregnant..
They moved me from the main ER to another area in ER where I had privacy, the admin came back and we had the agreement that I would have R with me but I would be required to have a midwife with me all times at night and R would sleep in a port-a-cot. I could still breastfeed my baby so of course this was a great compromise.
Then, my treatment began... I was severely dehydrated and dangerously low on electrolytes. My potassium was extremely low, I could have had a heart attack if I left it any longer, it was a surprise it hadn't happened already... they told me that was why I was feeling so weak and my heart was feeling like it was pounding all the time. I had 8L of fluids go through me in 24 hours, IV steroids and heparin shots. BUT that's rather dismissive of what I went through.. I need to process it.. so here it is..
First IV, failed, second... failed.. 3 failed.... I had 18 failed attempts before I was hydrated enough for the line to stay in. I even had a surgeon tissue it (go through the vein into the tissue)... I was tired, in pain and I hate needles so this was traumatising... at 2 am after yet another failed, I was distressed. Even the midwife took R out (with permission) for a moment because I was that upset. She said she would give me time to calm down... she was lovely. I regret not remembering her name so I can thank her.
After the surgeon's IV failed, another doctor came in and attempted it. I had an hour with out being jabbed so I was in a better emotional place. I had a chance to sleep/ meditate. FINALLY the IV went in and stayed in... for a while.
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| Something like the 15th attempt |
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| which failed... |
R was my light in the darkness, had I been alone, I would have been far worse....
The next few days were a blur of poking, needles, Obs and lots of tears. I was not allowed to eat for the first day or so, not that I cared. I had no idea what my treatment would be, or how things actually were. I was told they would just monitor me. I felt like giving up.
I graduated to free-fluids and then as the steroids started to do their magic, I progressed onto low residue and had Ensure help me gain weight and to fill in the nutritional gaps... R slept in bed with me and nursed whenever. His cold became bronchiolitis so I had to transfer or send him home... I couldn't deny him the breast so I chose to transfer, luckily this time there was a bed.
On my last day before transferring to a different hospital things turned sour.
I had a midwife turn against me, probably because I snapped at her for waking R at 9:30 at night. We didn't click, unlike the others. She went behind my back and started telling everyone I needed to give my bub formula, he was STARVING apparently.. however, little did she know it was only earlier that day I had a NICU midwife insist he was fine and I was giving him enough milk.
I lost all my support though, I was alone and a midwife was insisting he was starving, the nurses listened to her, so I gave in... I told them ok, I will wean...
I called my mum immediately, she is an experienced formula feeder, I asked her to get the bottles and formula for me, I trusted her judgement. Before I was off the phone a nurse had brought me formula and bottles... I'm certain it was there waiting while the nurses coerced me into giving up. They even asked S to convince me to wean but he told them no way...
I had the social worker visit, she told me she understood what I was feeling - she breastfed her first and had to use formula with her second. I felt so alone, nobody actually even bothered to find out why I was upset, they just assumed I look down on bottle feeding and felt like a bad mum, rather than acknowledging that something I worked extremely hard to succeed at was being ripped out from under me and I was so sure it wasn't truly necessary. I just cried and let her tell me her story... I don't think she told me because I needed to hear it but because she needed to tell it.
My mum arrived and I asked her to show me what to do. R refused the bottle, we tried all her tricks but he was far from interested. My mum then said to me 'if he was as hungry a they're making out, he would have taken it'... I didn't try again, but having the stuff there shut the midwife and the nurses up fortunately.
There was a screw up with the transfer so my mum ended up transferring us in he own car, me in a gown and jelco still in. She is an ambulance officer, otherwise it would have taken longer, R and I would have been separated...I couldn't let that happen.
At the new hospital I met the gastro team. I was told I'd get a letter for my follow up appointment when I was discharged, I was excited because I thought finally, I will get into remission. On steroids, I am 'normal'... just not emotionally (I go a bit crazy on them... nasty side effects but so worth it) When I got home, I felt like a whole new person! I had energy! I was home and I continued to breastfeed. I was feeling well....Until I weaned off the steroids...
Bam, back into the sickness, the pain and the constant bowel evacuation, I literally could not eat, I was on a liquid diet and even then was struggling.... I went back to hospital several times, only once staying for a few hours for rehydration. I was sent home with more steroids (I had less than a week off them...) and an antacid type pill that is supposed to help heal the gut as well... told to wait for my follow-up appointment and keep taking my meds... I was in so much pain at this point, I begged for pain relief and was sent home with oxycodone with strict instructions to take after nursing to limit the amount my bub got in my milk.
So that's what I did.. for a bit...
My birthday was a nightmare, I was incredibly sick. I had hoped for months to go out to dinner with my family and see a movie. Something so the day of my birth wasn't insignificant. Instead I was on so much medication that I was considering weaning... even though they were supposed to be fine for short term...I slept in the lounge most days, only so I could still interact with my kids... I slept a lot... cried a lot.. and the rest of the time writhing in pain.... the pain was starting to destroy me. I gave up.
After being brushed off at the hospital for a couple of weeks, and NOT receiving an appointment for my follow-up, I asked what was going on after my parents insisted.. I found out they had only JUST got the referral and were yet to make me an appointment.. I could not wait anymore so I saw my GP and begged him for help. He was disgusted with my treatment (or lack of) to say the least so he referred me to a gastroenterologist in the city. He even called the office to push the appointment sooner, telling me it is likely I will need surgery as I was showing signs of partial obstructions. I did not want surgery but at that point, it was the light I needed. I had a little hope again.
I had the consult with my new GI and fell in love with him, I hadn't met such a caring doctor in a while (besides my GP). He took me on straight away and went into so much more detail about Crohn's, treatment and so on. I needed a colonoscopy and endoscopy to see what was going on (something that didn't actually happen in the hospital). I finally understood....AND he told me I had not reached the end of the line when I came to medication... which is what I was told at the second hospital.. they told me they won't even try infliximab because it won't work, my disease was only in my small bowel, infliximab won't work unless it's in the colon...
I cried, I was so relieved.. somebody was going to help me! I had a wedding coming up and focused on that to get me through until I had the colonoscopy/endoscopy...
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| Bride's maid! :) |
I had a wedding on the 6th of Oct, I was a bridesmaid for my best friend. I was very sick, at this point I had lost 15 kilos and was still dropping 2 kg a week, but did my best to hide it.
On the way home, I started to feel even more ill. I put it down to the wine which I promptly threw up when I got home... the vomiting didn't stop, so I knew it was not the wine... I threw up blood... I knew something was wrong.. S freaked out and nearly took me to hospital then and there. I said no, give me another day, I am too tired...
On the 8th I was taken back. S called the hospital where my doctor works at (which is neither of the hospitals I had been in before) and they told me to go in immediately...I freaked out because the last time it was traumatising....
I had lost an incredible amount of weight at this point, I'm surprised I actually was able to breastfeed still! I was not making enough.. so I made the decision to give him formula if I was admitted.. I wasn't going to fight to have him with me... I had given up, I needed to rest...
In ER, again, I was taken in extremely fast... less than 5 minutes, and this was an extremely busy day (the nurses told me they usually get around 30, that day they had 50)... I was blown away how quickly I was seen...but I was dead on my feet and probably looked like I was going to drop.. I felt like it...
The doctor tried to take blood but I was so dehydrated he couldn't... I couldn't understand how I kept getting so dehydrated when my flare was apparently in just my small bowel - the terminal ileum. I had 2L put through before he could take blood, the pain relief I had been taking was no longer working (a month on it reduced the effectiveness.. it's a scary drug, all to easy to get addicted... I hated being on it) so they doubled the dose. I took 2 tablets....I was really out of it from here on, but I still remember.
One of the GI doctors from the first hospital happened to be there, one of my favourites, and he asked how things were. He asked about my son, if I was still breastfeeding and if I was going to want him with me... I said no, we were going to keep him at home and give formula... I knew if I had him with me I would not recover, because I would be too focused on him and not myself.. and it would make any treatment I needed tricky... I had little doubt I could relactate once I was well again.
I was moved to another ward - where you stay short term, if you need longer treatment you move to another ward. I slept, and went through all the same things again.
The next morning a nurse surprised me by telling me I had a colonoscopy at 10am, they couldn't find an anaesthetist so I'd have to be awake but sedated. I spent that morning crying in the shower and hiding behind my curtains around my bed. Hoping I could just close my eyes and drift away into nothingness....My nurse asked if I was ok and I told her I was absolutely terrified, I was still traumatised from the last one... The only other colonoscopy I had was for diagnosis, I also had an endoscopy, and I was awake then too.. I had a panic attack. I felt like I was choking on the scope during the endoscopy and the colonoscopy was painful and humiliating. They sedated me 3 times before I relaxed....
It's one of the more traumatic events in my life and I find it difficult to talk/write about..... I still have PTSD from it ... one day I might be able to break free and speak openly without reliving it but not today....
10am came, the orderlies came and took me. As they wheeled me in the room the doctor introduced the anaesthetist, telling me they found one and that I didn't have to deal with it awake. I cried tears of relief... I watched the drug go into my jelco, within seconds I was asleep. I woke up in recovery, where I don't remember anything significant. I may have been told what they found but I don't remember.
My GI flew from a conference interstate and we had a talk about my treatment plan. I remember crying when he told me my disease had spread to my large bowel, the inflammation in my small bowel was severe, in my colon it was moderate. We knew why it was so difficult for me to stay hydrated and why the pain I was experiencing was extreme. My guts were literally bleeding, ulcerated and being ripped to shreds. The inflammation was so bad in my Ileum that whatever I did eat was getting obstructed and had to push through. That was why even on oxycodone I was nearly passing out from the pain...
I didn't feel like an inconvenience at this point, I really was sick and it wasn't just me thinking it.
They were really quick to act, they started the paperwork necessary for me to have Medicare (Australia's free healthcare) cover the Infliximab. I was a special circumstance so I was approved for treatment straight away.
I had a bad day when my mum visited, I was frustrated with my hair - half combed out dreads at the time. I couldn't manage it, I couldn't finish combing them out so I ended up with a massive mess. My mum decided to pay for a haircut, afraid I'd regret cutting my hair off but knowing it was needed. She thought I was going to cry, and for a moment I almost did but I was a bit out of it and I don't think I truly realised what had happened until I got home and had a shower in my own home... I didn't feel like me, but I felt freed of the trauma... I've since fallen in love with short hair, in fact, I went even shorter 2 weeks ago :)
I was discharged a few days later, appointments already made for follow up and the infusions which I will need every 8 weeks for the rest of my life.
December came, I met with my GI and we had some great news. My inflammation markers went from 52 to undetectable, an absolute first. I finally could say I was in remission!!! It took 7 years, 4 of which were bad, the last 6 months had been a nightmare, to FINALLY find something that worked.
While now I may be fine most days, some aren't too great. I'm never going to be free of this disease, or truly free of the symptoms. If anything it has taught me patience, it has taught me to never loose hope even if the whole universe is black, mostly, it taught me just how precious life is.