After much soul searching I have decided to put some detail on here about my medical history. I must state that this is in no way for sympathy, (as some people may think) but purely to inform people about both Crohn's and HS. If it helps one person along the way, then it's worth it.
It all began 4 days after my MMR injections. My Mum says I was admitted to hospital after passing blood in my nappy. It was put down to severe colic, eventually cleared up, and up until the age of about 19-20 I was fine.
During this time, I had met my hubby and we were engaged to be married the year I turned 21, and was loving my time at Drama College.
My symptoms started, and were assumed to be normal teenage stuff, like only wanting to eat sweets and biscuits, getting terrible spots from this, and the occasional rush to the toilet.
My Mum and Dad, thankfully, were insitent with the doctors that more was wrong with me, and we kept badgering the doctors and specialists for more tests. By this time I could really only eat the odd slice of bread, tomatoes, biscuits and cake. I visited the toilet between 10 and 15 times a day, and when I say visited, I really mean ran like the clappers.
Finally we got a diagnosis, after barium meals, and endoscopies galore of Crohn's disease. I was put on steroids, and altered my diet to include more fibre. I was glad that the docs had finally realised there was something wrong with me. They had tried to put it down to the stress of getting married!
All went well for a couple of years, apart from tiredness, endless toilet visits, joint aches and pains and weight gain from the steroids I was fine. Then one day I had this really strange sensation. It was as if there was what I can only describe as a "grape" near my back passage. It was slightly uncomfortable, and didn't pass when I went to the loo. Gradually over the enxt few weeks the grape became a plum, then an apple. The docs had prescribed me with steroids to use, lets just say "in a different way" and this didnt help. In fact it made the situation worse. One night I was lying in bed and I felt as if there was a worm moving around in my left bum cheek. Weird.
We went on holiday on a canal boat for a week, and that was when things went really pear shaped. The apple sized thing began to feel as if it was now a grapefuit, the worm type thing had worked its way to the outside of my body. I now know it was an internal abscess, and that the worm type thingy was it tracking to find a way to release the poison.
Needless to say I didn't get off the canal boat that much. The poison worked it's way out, and that is one of my scariest memories. I won't go into detail, but hubby promptly packed me into the car and drove me home. We called out the doctor, and I was admitted to the local hospital.
I can't really remember much, apart from coming round in the High Dependancy Unit, hooked up to every machine possible and being scared. They had rushed me to theatre as I had severe septaceimia from the abscess. The had had to cut away a lot of my bum cheek to release the pressure and drain it, and it would have to be packed daily until it healed.
They tried doing the packing of the wound on the ward, but it was too painful, the wound itself was approx 3 inches deep, and about 6 inches accross. In the end they took me to theatre every day for 14 days to do the dressings, then introduced me to my friendly bottle of entenox. Its the stuff women use when they are in labour, that combined with a morphine PCA (patient controlled analgesia), and patient nurses got me through the daily dressings.
That time I was in the hospital for three months. Evenutally (and I'm missing out loads of stuff here) the wound healed. I got back to normal, went back to work, even got a new job, and was resonably healthy.
I forgot to mention that during this time I had been told that because of where the abscess was situated I had to be given an ileostomy. (A piece of bowel is pulled through the stomach wall to drain your waste and is collected in a changeable and drainable bag). This was hopefully temporary.
Roughly 12 months later, the abscess was back. I had to go through the whole scenario again, and this time the lower part of my bowel was removed, and the ileostomy was made permanent. MRI scans showed that there were 2 "collections" in my abdomen, they were linked together and draining externally via fistula's and the abscesses. Again the wounds were drained and packed. More morphine, more entenox, and a long stay in the hossy again.
Again I had a few good months, then it flared up again, this time I somehow ended up with a different surgeon. I'll call him Mr R. He had my MRI done again, he operated in a totally different way. As deep as the other surgeon, but not as intrusive, if that makes sense. He didn't agree with the tight packing of the wound, therefore it was packed loosly, less pain, less pain killers and it healed quickly and cleanly.
I had my last MRI at the end of last year, and tha nks to Mr R's approach, the two collections have now totally gone. He has told me that Crohn's is a difficult disease to treat and there are no guarantee's. Last year I had three op's I have been off work now for 14 months, in that time I haven't been able to sit properly, I always have to lean to one side. Mr R see's me regularly, and he recently advised me I have HS (Hidradenitis Suppuritiva) as well. It's linked to the Crohn's and causes large "lumps" which are extremely painful. The can be situated in the armpit and groin. Mr R has linked up with Dr L, and they have now put me on immunosupressant tablets. (Both the Crohn's and the HS trick your body into over working in the areas where the wounds are, your immune system becomes too high, and prevents healing). These tablets will lower my immune system, and hopefully increase the healing process. Together with that I am on regular doses of Infliximab/Remicade, another immunosuppressant, given via infusion (drip). I have to have regular blood tests to check my white cell count hasn't become too low, leaving me open to infections. If I get a cough or cold I have to go straight to my GP. As detaile don my previous post I had a bad reaction to the infusion. They lowered the rate at which it was fed into my blood stream, and this tricked my body into thinking there was nothing going in. It stopped the reaction, and meant I could complete that course. I am due for anothe infusion at the end of October, and hopefully at the slower rate, my body wont react. I've since found out it was a form of Anaphylactic shock.
Anyway, my Crohn's is healing well. I still have to wear the dressings, and I can just about bare my weight on that cheek now. My HS is still sore. It goes down for a few days then flare's up again. I'm not sure if it's reacting to the infliximab yet, but I'll probably know after the next treatment.
Mr R always calls me the pain in the bum! I love him to bits, he's the only surgeon who has been completely honest with me. I know that if I need to I can pick up the phone and ring his secretary and he will see me at his next clinic.
There's currently no cure for Crohn's or HS. They don't know for sure what causes them, and they don't really know the best treatments for them. It's all trial and error.
I know everything happens for a reason, and I often think "why me?" I couldn't have got through this without my parents, who have supplied endless hospital meals, ferried me to appointments, let me stay with them while I was recovering, my friends who have stuck by me through the years and understand when I go to their house, or if they come to see me that I need to hog the sofa. But most of all my hubby. I was diagnosed with Crohn's a year after we were married. I had my ileostomy 2 years after we were married. Since then I have had approx 40 operations, and round about 12 years of hospital visits, stays etc, and he's only missed one night in coming to see me.
So that's about it. Me in a nutshell, and yes I am slightly nutty. I may have 2 diseases and be ill, but I still try and keep my sense of humour and think of others.
Sorry if I've rambled too much, don't worry this will soon be archived!
But I hope it helps satify the curiosity of some, and educates others, and remember if you need the links for Crohn's and HS they can be found on the right hand side of the blog.
Love and healing hugs to all