Where to begin?
I guess Friday 13th May wasn’t the best date to start. oh well, luck hasn’t been on my side lately for lots of reasons.
Crohn’s and IBD sucks. I think we would all agree. Any bowel condition is vile, for those who have minor cramping to full on debilitation its one of the most lonely, embarrassing and excruciating conditions out there. Not to put it on a pedestal.
I’ve been an in patient at the Queen Elizabeth University Hospital Birmingham now for 42 days and counting. My room is my world and everything in it. Control freak is not the word.
January 2016. Post Christmas I found out the best news anyone could wish for. I’m pregnant. woo. crazy surprise for me and my partner Matt who have been together 6 years this year. Ready for a family? hell no, but who is right things happen, and for us it was the best news ever. I’ve always wanted children and with turning the big 30 this year its the right time, I had thought about my Crohn’s a lot and how it might affect me having children, but most of the time I do okay and have seen so many fantastic ladies have IBD babies everyday so I didn’t stress too much. Hormones are a bugger for my bowel, always have been so I have always been on implant contraception to avoid any monthly niggles. That came out, expired as they do. I thought I won’t have another put in at 30 years of age, I will go back on oral .. and then look what happened. A little bit of a dodgy tummy and fail – beware ladies oral contraception is not the one to be taking with a dodgy bowel, you will get more than you bargained for!
I turned 30 start of Feb had been feeling all fluey for a while, but we booked a little holiday to Cape Verde to get away from the cold British winter, I always like to travel in winter I hate the cold, as all of us immunocompromised do I am sure and love the feel of the sun on my bones. Cape Verde, why? who knows, nice to chill but would I go back… probably not, not enough to do for our liking ! Anyway, the sun made me feel a lot brighter but I didn’t feel 100%.
We landed and I got a text from my friend … who asked whether I had seen the news about a virus called Zika. Naturally, I said no, the travel warnings for the disease were announced the day we landed. Zika, sounded great. Found the WIFI code at the hotel and googled the hell out of it. Mosquitos, Cape Verde, small headed babies, great. I had landed in a place that had incidence of Zika, yes I wasn’t in Mexico or Brazil, but they were cases never the less, I had Crohn’s and was pregnant and had no clue of the dangers. I went to see the holiday rep, as I was naturally distressed. They didn’t know a lot themselves. great start, a prisoner paranoid about mosquito bites for a week.
You are probably thinking what has Zika Virus got to do with Crohn’s? I will come to that! we stayed the week on resort, we had the chance to fly home if we wanted but by the time the flight was available I couldn’t justify flying back to Manchester when we could get back to Birmingham 24 hours later and home. So our holiday was living in the room, which was very smart might I add and avoiding all pesky critters. I was so relived when we landed in blighty, but god I felt ill on the plane, so cold and sweaty it was vile.
I proceeded to get awful temperature that I couldn’t control when we came back, so off to the GP I went. I told them about my recent trip, even though I proceeded to say I had not been bitten. However the GP went into panic mode and tropical disease testing was rolled out just to make sure. 9 weeks pregnant and stressed with the thought of Zika does nothing for your bowel. Nor does waiting around to know I haven’t got Zika for infection to get worse and feel really sick 😦 .. I guess the doctors were covering all bases, but a delay on treating an infection which turned out to be simple sinusitis was what started this whole mess.
Amoxiclav – the dreaded antibiotics. so here’s the thing, one of life’s questions for us Crohn’s patients, how do you not take antibiotic for infection without flaring? Antibiotics ruin my life, I swear they ruined by bowel in the first place, but what do you do? I was in so much pain and pregnant I did what I needed too. First 4 days this year in hospital done in February, head felt so much better and no more temperatures. Great but oh boy what was to come.
My head felt so much better, but god my bowel felt awful. Two weeks after the dreaded sinusitis my tummy was in bits and inflammation markers at 90. Now for anyone confused or not getting this little Crohn’s lottery of CRP markers I shall explain, in my world what CRP means to me. well, it basically means everything, it rules my life. CRP is a blood test that measures how much inflammation is in your body.
The doctors say some Crohn’s patients have CRP tests and they do not correlate at all with the inflammatory response in their systems, for example, the IBD could be really severe and CRP scores are low. (normal is between 1-10) anything above indicates inflammation in the body, anywhere it is not Crohn’s specific ! However, I am a lucky one, I can actually predict the numbers when I flare. I panic when they go up, I’m obsessed when they go down. I am a crazy CRP lady. To the point that this weekend, I am going to put on a line of lottery numbers with this weeks daily CRP, why not, ill be a rich inflamed woman! Here’s a little graph of mine over the last yar…
Now flaring hurts me in the 20’s. sore. As you can see I bumble along most of the time. But 59 , Jesus Christ. 198. practically dead.
I spent 4 weeks at home with all this going on before A&E , with this monster rising, pregnant, scared and limited with drugs because of baby. Prednisolone, Humira and numbing cream was not doing the trick! My bum has so many fissures I cannot count, spending four hours in the bath most days trying to just scream through the pain trying not to boil baby in the bath but the only relief was heat under the tap, I even bought a higher loo seat off amazon because I couldn’t sit down, converting my bathroom into a mini living space as I am sure all of our IBD’er do !
Enough is enough though I gave in, I’m stubborn as hell but its beat me, too many tears, no point being brave when you know things aren’t great.
2nd April 2016 – Admittance. No going back!
Here I am… 13th May still here .. rocking ward 727, room 6 , QE Birmingham. Story in order..
Flaring left side colitis, high CRP, rectal fissures and a fistula, can’t see, stand, move, 17 weeks pregnant 4 days. To be honest, I don’t really remember a lot, still don’t the days have all blurred and the weeks are not weeks anymore. The IV Hydrocortisone has ripped through my body and destroyed my brain, like crazy lady with probably no sleep for a record of 5 weeks 3 days. Clinically, I think people have been on IV Hydro for 4 weeks max so the consultant said, but what has happened to me is probably typical that I am the chosen one to fry. well they had no choice.
They did the normal for any Crohn’s patient flaring, IV hydrocortisone, see a little drop in inflammation then reduce the dose and aim for the prednisolone. All this whilst I’m puffing and panting on a limited list of drugs, because of baby. The choice. Oramorph, Pethedine, morphine subcutaneous injection, paracetamol. Didn’t really want to take any, but what do you do, I’m carrying my unborn child, I’m distressed with a high heart rate and blood pressure and I’m rolling around being sick in an awful state of near death.The only thing for comfort was that you hear of mothers taking drugs throughout pregnancy and the babies come out rattling and you know they can dry them out. Nevertheless, still worrying like hell as you can imagine.
The other thing is none of these pain drugs I don’t think they help with your bowel overall they just clog it up and make you more spasmed. The come down is awful, you psychologically start thinking you can’t live without pain relief so every 4 hours I’m pressing the bell until I get my next feed, like some sort of possessed women. Pregnant and flaring is the hardest thing I have ever had to go through in my life, Crohn’s is hard but fighting for two is really not the one, first time mum, I should be blooming and going out for green tea with my pregnant friends, picking prams and choosing nursery colours. no, I’m a head screwed, haven’t slept in weeks, high one minute, crying the next. manic, obsessed about objects in my room not being in the right place, bump is growing, I can’t move, the list goes on. The worst thing about all of this is the drugs are making me worse. (queue the verve song on loud and repeat)
So what’s the crack I hear you say? well the old left side has failed in the sense that it doesn’t like coming down from steroids, refractory Crohn’s they call it, basically two fingers to settling. great. why me. poor baby.
My choices ? well aside from sheer panic, they either hold me on medication and fry my brain full of steriods until baby is big, or surgery. I feel like I have spent the last 5 weeks in a limbo between the surgical and medical team, both fantastic, for sure, but which route would you go. The thought of facing a temporary ileo -ostomy, new, whilst growing a bump? going through post op, infection? oh I cried, and cried and cried, I don’t want them to cut me open. But then I have a healthy small bowel so shut off the large bowel to heal might mean I get my life back, some normality, but with bump growing oh why. I guess any decision is out of my hands, baby is not classed as ‘viable’ until 24 weeks and I am told severe disease is worse for baby than an operation, so whatever I need to do I will do. I don’t like this ‘viable’ word though, keep my baby safe.
So May 4th was the date they made the decision. I have until the 18th May to get the bowel working or ‘better’ or I am having a bowel cut off and a new designer mummy bag. Bags I love, not sure about this one.
In the mean time the days in between are last hope saloon.
Humira failed me, my angel has flown, but the team have one more plan. ‘Infliximab’! now for those who know their biologics this is a swap, not a great option to swap in pregnancy and have Humira in my system but again I am running out of choices. So I had the infusion on Saturday 7th May. Its been a week since the infusion and no reactions yay ! Come girl you can do this.
It’s now Friday 13th May- one week after infusion. CRP 19. Bowel is holding. Maximum steroids still but can I hold the weekend ?
Let’s see, me and baby will keep you posted!