Thanks for taking the time to visit my JustGiving page.
My names crystaland I was diagnosed with Crohn's disease at 19, although I had begun getting illat 15. I started struggling with things like keeping up with my friends when itcame to things like dance classes and walking up hills to meet my friend, Sheoften had to meet me half way and then began coming down to get me. We laughedabout it at the time and I put it down to being lazy, but I knew somethingwasn't right. It wasn’t long before I was suffering from fatigue, nausea, stomachcramps and severe diarrhoea, (this was to go on for years). I finished schooland started college, by this time I was struggling to keep up, I fell behindwith work and most of the time didn't bother to show up having spent most thenight and morning on the toilet, so I took the easy way out and quit. I had been told Ihad IBS (irritable bowel syndrome) and was tired of being sent away with sillyadvice such as try changing my diet, which may I just add had always beenhealthy; with no further help and times where I wasn't even looked at whilstbeing spoken to as if I was wasting their time, I gave up. I felt likescreaming every time I left the doctors surgery and would often walk the longway home so by the time i reached home my mum couldn't make out I'd beencrying.
I fell pregnant at16 whilst on the pill, the pill that had little chance of causing any effectagainst pregnancy when you’re going toilet up to 17 times a day and throwing upnumerous times. It was when I was 8and a half months pregnant that I had my first surgery, I woke up one morningand couldn't walk, the pain was so bad I could just about drag myself in a carto the doctors. I was seen by my GP who at the time my mum had to tell her toexamine me because again 'the hypochondriac' wasn't being listened to, afterexamination she handed me a piece of paper and sent me straight to A&E withmy first perianal abscess; this was the first of many to come and worse. I was17, 8 and a half months pregnant lying on a surgical table exhausted from yearsof being ill, awake only paralysed by an epidural, being sung to by theatrestaff to keep me calm as I had the abscess drained. After I gave birthto my daughter I found a reason to push myself, to better myself, so I stoppedtalking about my illness, hid my symptoms from everyone I could, and just got onwith it. I went back to college and was determined to keep up withnormality.
It wasn't longbefore college became a struggle again, I have to say this was an unbelievablytuff time for me. I began going toilet even more times a day I wrote it downand was going anything between 17 - 25 times a day; I was struggling to eatanything and being sick often, not to mention the pain! The pain that makes mesweat from head to toe, cry from fear before its even got to its worse, oftenbringing me to the floor, and pray (begging) for the pain to end before it hadeven began to get to its worse even though I knew each time I would have to gothrough it. I was so sick I didn't realise how sick I was, because I didn'twant this! It was messing up my life, me being a proper parent, me being ableto get through college and what was most frustrating what angered me most was Idid not know what it was that was causing this. It began messing with my head,I started panicking if I didn't have 20p coins in my purse to use on my journeyto college jumping of half way between my journey to use the toilets atthe train station. Making searching for a toilet the first thing I do once Iwas out anywhere new, starving myself when I felt I could eat out of fear I wasgoing to need a toilet or be sick or worse start the pain of and everyone wouldsee! In the end things got so bad I could no longer make it to the toilet andwas having accidents every day, even on my way to college, but I wanted sobadly to finish my course I just swallowed my pride and got on with it, packinga spare pair of clothing and wash things every day and changing in thetoilets. Things soon becamehard to explain away to my tutors, family and friends; I was ending up barelyable to function, to do anything. I was carrying bedding into my toilet as Ioften spent hours on the toilet all night, throwing a blanket over me laying apillow on my lap and falling asleep on the toilet. My poor daughter wassuffering as I was crumbling around her unable to look after her properly, andmy relationship with her dad was suffering as after everything I found this tobe the least important to keep up with, performing sexually was too painfulwith little or none sexual drive and I felt gross given the circumstance.
My mum couldn't takeanymore and begged me to go to the doctors 'again'. I was literally holding onto things around me to keep myself up when I walked in to the surgery that day,mum talked for me, I couldn't even be bothered to waste energy explaining as Ino longer cared if they listened, in my head I had already given up. I remembermum being handed a blood form and leaving, I had the bloods done that day. Thefollowing day my mum got a call, the doctor told me to come in straight away,explaining that my CRP was raised significantly and he was referring me to seea gastroenterologist ASAP. He managed to get me an appointment the very nextweek.
I saw Dr Theodossithat week he was lovely to me, when I cried when he asked to look at my bum hebarely touched me before saying he was going to do it under sedation and notput me through any more, as by this point I had already had another two abscessdrained. He said that day that I either had C DIFF (Clostridium Difficile) orCrohn’s disease, and I was to come in to hospital the very next day with thepossibility of being admitted depending on his findings during theendoscopy. The next day I wassedated and had the endoscopy, I remember waking up with a doctor sitting nextto me he was asking me questions, loads of questions and I remember feeling upsetand getting in a state as I was to unwell to even talk, yes talk, eventuallythe doctor gave me anti sickness and I blacked out. From what I was told mybody just shut down, and couldn't cope any more from sheer exhaustion with thatI needed up in HDU (high dependency unit). It was from thisadmittance that I was diagnosed with Crohns disease, following biopsies takenfrom my bowel and other relating symptoms.
I eventually had mycare transferred over to St George’s hospital under Dr Pollock (medical) andProfessor Kumar (surgeon).
I continued to livemy life as best I could on medications prescribed, which wasn't much of a life!I was put on a treatment called infliximab, which meant I had to spend a fewhours in hospital every 8 weeks as this was given via infusion. This treatmentuse to make me feel fab for the first 2 -3 weeks and gradually I would start tofeel weak and sick again. Yes I went out with my friends, yes I worked but itall took its toll on my body. I developed a perianal fistula which led me tohave countless operations to drain surrounding abscess and remove the fistulaitself, and I must say the pain from this was just beyond words. I was alwaysdevastated after these operations and most of all embarrassed so embarrassed Ididn't even tell my closest friend what I was going through; how I dealt withit, I went in had surgery and carried on as if nothing happened, as if I spentthat weekend in and that was that. I even use to make my family swear never totell anyone even other family members, so even they didn't know of many of myhospital admittance or surgery's. Yes I felt alone but I could never live downthe shame if people found out, and I always felt that I would be laughed at orworse that they would find me gross.
I did many sillythings to hide my symptoms; begin talking or talk louder if my stomach startedmaking noises, hide clothing in my handbag, pretend something drastic had happenedat home as an escape if I felt my stomach pains coming or if I felt the need togo toilet; eventually I could do no more!
January Monday the 21st 2013
The day I had myoperation to have an ileostomy, I knew I was to have this as two weeksbefore I had an outpatient appointment, where I was told that the skin aroundmy anus was so severely burnt from years of living with the severe diarrhoeathat the only way to save this was to divert my stools. I remember I took myfriend with me and as soon as the surgeon mentioned a bag I cried hysterically.I couldn't stop myself and I started my friend off, we cried together for awhile and I left crying; agreeing to the operation but completely disagreeingwith the idea of it. Well I got brought in by ambulance a week or so afterfollowing a flare up and was to be operated on a few days later.
I remember wakingup feeling like I had been run over by a large steam roller I had never felt sofrozen from pain I didn't expect anything like it. I was screaming yet not muchsound was coming out the pain kept me from being able to get much louder. Isuffered greatly after this operation, it was just unfortunate that I got soill, as often these go well and people go home a few days later. I ended upwith sepsis and a blockage which lasted days; in the end I was throwing up myown faecal matter, it was just horrendous! However a few weekslater it was all worth it, I never felt so well, of course I was weak, andstill in a lot of pain but this didn't matter for the first time in YEARS Ifelt well within myself! It was like this bag, this thing that I had dreadedhaving done and even regretted soon after had given me my life back!
This feeling didn'tlast long though I soon started getting stomach cramps, struggling to eat and beingsick and my joints were just so painful. Again I tried to hide this, going outwhenever I could, getting on with work, picking my daughter up after work,making dinner, playing mummy and dropping down at the end of the day in agony.I smiled when people asked if I was ok, I dressed up and put on makeup taking breaks inbetween just to lay down and cover myself up with a blanket for a fewmoments to help me feel warm from the constant fevers I was getting. My friends helped me when it came to buying clothes, always ran ahead to save toilet spacefor me and if we was out gave me a little sign if my bag was showing so that Icould cover it back up. They made me feel 'normal'. I wanted so bad to keep upwith my friends and at times I did but it always meant days of suffering after.And times when I did feel awful and would mention I'm feeling a little underthe weather people would always brush it of telling me I look fine, that Idon't look sick. I can't blame them it's what I wanted everyone to think anyway.
I was admitted tohospital February this year and this had to be the most horrific time of mylife, whenever I think about it I cry as I'm still struggling to come to termswith everything that I went through. I remember writing a status on Facebookexplaining what I was going through and how I had felt at that time....
‘After being admitted to hospital at the beginning of January for yet another surgery after being discharged everythingwent down hill, I had to go back to A&E only a week or so later so rough Icould barely walk. Well all I can say is 3 more operations later and having to fight through sepsis this has to be the hardest fight I've had to put up. Beingbed bound was awful, having to rely on someone to do absolutely everything foru is so scary never have I felt so useless, frustrated and vulnerable, theamount of times I looked out the window from where I was lying and thought dying wouldn't be so bad (I know, how ungrateful of me). With a wound so bad I've spent the last 2 weeks going to theatre every two days just to get it changed(I'm not a wimp I swear) , I've got a high pain threshold yet this has to bethe first time the noise of my own scream scared me! It was almost as if itwasn't me screaming but me listening to someone else scream from a distance.I'm proud of myself today as I managed to have my dressing changed on the ward(no more putting me to sleep), it took a long time, both hands had to be heldand two nurses crying with me but I did it! I'm not septic anymore and I'mwalking (with a zimmer frame) but it's such a relief to get out of bed.Tomorrow I'm having my catheter (I think that's how u spell it) out, and I'mgonna do much more walking. I can't thank my mum enuf for every step I take shetakes with me, she is my rock I think god for her, she did this with me. I must say the hardest part of my battle is people judging me by the way I look, please don't think that just because Im young, put on a smile and makeup that I'm not orhave not suffered for the best part of my teenage years rite up until thispoint, like I keep saying it's just agony in disguise. I'm staying positive andlooking forward to being with my little girl real soon, she's my ticket out ofhere! Godless and goodnight xxx.
Facebook status only showed friends and family a piece of what I was going through. I’mexhausted from pain and at times wonder how I manage as it can be extreme.After all I had been through, for the first time I started thinking suicidalthoughts, I even thought my daughter would be better off without me, what good was I to her anyway? I just didn't want to be here any longer I was tired ofsuffering like this and thoughts of me not waking up again after another theatre trip made me feel relaxed. I was depressed, I was crying numerous times a day, if it wasn't for my family and friends I would still be thinking these thoughts. I'm still a little depressed and I have low self-esteem and have days where all I do that day is cry, but I'm slowly getting better, it will taketime.
I spent weeks being septic and had to learn to walk again as my muscles were so weak from being bedbound for months. I found it so hard to let anyone other than my mum near my bum I trusted no one and I still don't. My surgeon removed one third of my large bowel and hoped that this would make me better and stop my bowel fromproducing pus but it just continued, eventually he told me that there is no more he can do and the only way to better my situation was to remove the rest of my large bowel, rectum and anus (proctectomy). I could barely see him whenhe was standing by my bedside telling me this as my tears blurred him out. Life just felt so unfair at this very moment, I even now think what I must have done to deserve this. These are the regular things I have to deal with all the time, ulcers in my mouth, on my vagina, back pain from spondylitis, being fed through a tube, hair loss,inflammation of my joints, countless MRI scans, CT scans, and blood transfusions there just not so important when trying to get the Crohns undercontrol is the ultimate goal, these are the things I’m just expected to cope with like this is just normal.
The picture I posted of my wound was the first time I saw it myself, I asked my mum to take a photo of it and show me; my heart broke when I saw what the surgeons had done to me(even though I knew it was necessary), when my mum left the hospital thatevening I cried till I fell asleep.
I thought over and over whether or not to post pictures of what perianal Crohns disease had left me with, but after long hesitation a few friends and my mum made me feel like it was the right thing to do. I'm not one to show people (strangers) thingslike that as it's so personal and also shocking to see, however I know Crohn's disease is a disease people don’t know much about and I also am aware somepeople live normal lives with Crohns having little to none effect on them;whilst others suffer greatly and in silence through fear of embarrassment and peoples lack of understanding through lack of knowledge.
At this moment in time I'm wearing Tena lady (nappies) as I’m leaking puss, this is due to my bowel being so badly inflamed it’s just making this horrid pus which leaves mein agony when it leaks and burns my wound. It defiantly makes me feel more secure wearing these, something a lady I met in hospital (also a Crohn's sufferer) told me about, but makes me feel so low knowing I'm 25 and having to wear nappies. Me and the lady I met in hospital was able to laugh about things and share our stories on what we had been through and coping with Crohns. We became close friends and I even at times felt silly for crying over what I hadbeen through as it seemed little compared to how she has suffered, she would always quickly shut me down letting me no it didn't matter as we're both suffering just differently. I never told her this and she's going to find out after reading this but on the day of her surgery part of the operation was that he may have to remove heranus, which she agreed to. I remember listening close as Professor Kumarexplained what he had done to her in theatre the following day; he said he didn't do this after all. I laid down put my face in my pillow and sobbed my heart outand I can't believe what I'm about to say next but It was because I felt so jealous, I wanted Kumar to turn round to me and say that I didn't have to havemine removed, that he can save mine as well! She heard me crying and when she asked if I was ok, I lied and said I was in pain; I want so much even now to hear my surgeon tell me that I don't have to have it removed, that there's more we can try, but every time it's the same answer. I take morphine every daynumerous times a day just to damper the pain enough to get through the day,this along with other painkillers, have just finished a course of steroids, amon a long course of antibiotics, my hairs started to fall out and I have tohave my wound packed and dressed every day until it heals. I've just startedinfliximab infusions again in a hope to keep my Crohn's under control longenough until I go back for my proctectomy surgery.
Until now I havealways kept as much about what I have been through to myself. I don't likepeople feeling sorry for me and I have longed to live as much a normal life as possible, I am no longer ashamed, I no longer blame myself, and I think there is so much good I can do for others in sharing my story and that's so much more important than keeping up an appearance. I would like to not only raise awareness of Crohn’s disease but also give something back to the hospital and doctors that helped save my life. I hope my story will encourage people todonate which will help research new treatments and in the hope that eventually a cure will be found for bowel diseases.
crystal xxx
