Port-a-cath day 2

Hi guys!

Thought I would give a little update.. I am now 2 days post op from my port insertion . Still pretty sore and bruised. I changed the dressing last night and was pretty shocked by the size of the cut (see below) so not surprised it's sore!

I decided that I wasn't feeling up to work so let them know I'll be back on Monday. I feel quite bad as I did say I'd be back the day after! (doctors said no to that straight away!) I know I shouldn't worry about work, but I always do. I couldn't afford to lose my job.

I was awoken by my Rheumatologists secretary calling to say that now the port is in, he's requested my notes to make an appointment to get the ball rolling. I kind of grunted being half asleep! Everytime my husband has moved the last two nights I've been wide awake on the guard in case he moves and hits my chest, so it's been a very disturbed couple of nights.. knackered!! 

Its just as well I didn't go to work, as the senior sister of the Intermediate Car Team called and said she would pop by and drop off my box of supplies for the port and to go through a few things. Great, finally started to not worry about it as she knew what to do!
She came over and she was truly lovely, she had someone shadowing her too. We went through my background/health problems etc and she went through a bit about what they do. She said the port would need flushing with heparin every month if not being used so she will sort out a repeat prescription from my GP for that. They also cleaned and changed my dressing for me :)

My box of "goodies" she brought had a bunch of stuff in, all to keep here. She did get out all of the stuff to access percy port once (pic below) and said to put that in a sandwich box and carry with me as an "emergency" box. There is a lot to remember, but I'm sure it'll become second nature with time.

I will be taught how to access the port myself as apparently paramedics and some hospital nurses/doctors wouldn't feel comfortable doing it, so I need to be able to do it if needs must. They have a service from 8am-9pm so will always try to help between those hours but once I'm trained at least out of hours is covered too.

Below are a couple of pics... First is the cuts (you can't really see the port much here) and also all of the equipment I will need to access my port once

Bye for now!!

T x

Let's welcome Percy!

Hey all!

Sorry it's been awhile since I've posted, I've had a tough few weeks with feeling awful and tired etc.

Yesterday, I finally had my port-a-cath (Percy!) fitted under GA. I got there for 12:30 feeling really nauseous, luckily I wasn't actually sick.. yet! I got admitted onto the day case until, saw the surgeon & got consented consented, saw the anaesthetist and he assured me I'd have 2 strong anti-sickness drugs and another written up for after, then it was a case of waiting.

My surgeon popped out with the port and said they'd not ordered in a thinner one for the operation and they only had this one which would stick out a little further. If I wanted a thinner one I'd have to go back when they had it in.. Which meant me and hubby taking more time off work and me having to wait longer, so I just said use that.. Obviously a bit annoyed as the lack of organisation but oh well!

I went into the theatre and then the circus act of trying to canullate me began. Of course, they had lots of goes and nothing at all! Nothing in the arms, hands or feet to use, all they were doing was causing more bruises and damage. And hey, if an anaethetist can't do it, then there isn't much hope is there?! This was further confirmation that I really did need this doing! In the end, they took the decision to gas me to sleep and then try and get a canulla in whilst I was under. So I was told to take lots of deep breaths and the next thing I was waking up groggy, in alot of pain heaving and being sick, they had got a line into my foot so they gave me more antisickness medication and some pain medicine. Heaving was causing me loads of pain, it was so much sorer than I expected anyway! Then I was told I'd probably be more bruised than most as they had some problems getting it in which is why I was in theatre for 2 hours instead of the usual 1 hour.

After a short while in recovery, I was back on the ward having a drink and managed to stomach a sandwich. I was sent down for a routine chest xray to make sure it was sitting in the right place in the Vena Cava near the heart. As it was after 5, it was the out-of-hours service so was a bit of a pain. Then the hospital systems went down so the doctors couldn't review it, i wasn't allowed home until this had been checked. At this stage hubby and kids were waiting as the nurse had said I'd be ready to go at 7pm (which I would of been had the systems not gone down) it was 8pm before the doctors finally reviewed it and I was allowed home, I was told to call the practice and district nurses first thing to find out information on how to use it, supplies etc and I was sent on my way!

I certainly didn't get a lot of sleep, it was much more painful than I expected. It feels like I was on the losing side in a boxing ring and I'd been punched really hard in the right chest, neck and arm. I had planned to go back to work today, but the doctor said I wasn't allowed to go today, and shouldn't on Friday really (but I must go back tomorrow) Hubby had to stay off to be the responsible adult and watch me, so he helped me wash my hair as can't lift my arms that high yet and my hair was matted with blood at the back where it obviously ran down during surgery.

I called the surgery this morning so that the district nurses gave me a call as the ward had said. They called back, and don't have a clue about port-a-caths, only hickman lines. I explained that this had been my worry, that no one would know how to use it and it'd of been a waste of time! I know I need to be shown and taught to use it so this won't happen and if I get admitted etc I can access it and leave the tube in for nurses to use. They didn't know where to get supplies or anything, I stressed my worry and they said they'd try to find out what to do.
I got a call back saying that an IV nurse they spoke to had 12 people on their lists with ports so she is going to give me a ring at some point today.. Here's to hoping it'll be sorted out! I just want to know how to use it and then I can't get caught out by the "oh I can't use those!" line!!

Well, I am going to go and get some rest, and hopefully a nap considering I've had little sleep! I should imagine I'm going to see lots of bruising come out in the next few days and it'll be sore for a week probably. 

Bye for now..

Pic below is percy and the incision with dissolvable stitches under pressure dressing (Can't take off til tomorrow) and the tiny cut near jugular higher up with a steristrip.

New gastro

Hey,

Just a quick update today as I'm on my phone. I haven't felt too great this last while if I'm brutally honest, but hey all in the life of a crohnie!

I saw a new gastro last night, he seemed lovely. He agrees with the rheumatologist that I need anti-TNF biologicals.. With it being expensive the previous doctors seemed to just skirt around it, which has annoyed me quite a lot looking back as the last two years I've been left to suffer and get on with it! Him and the rheum had met up to discuss everything beforehand, neither could believe what's been going on..

To cut a long story short, I need to have the gastroscopy and colonoscopy under GA to check for narrowings and dilate any strictures if possible. I also need to have a repeat capsule endoscopy to check progress of the crohns over the last year or so since my last investigations.. Means to an end, it's gotta be done! We'll see what that brings!

Both consultants are chasing the insertion of the Hickman line though as I can't start any treatment until that's in place. The gastro wants me to have infliximab infusions through it, whereas I think my rheumatologist would rather me have humira, not sure why other than he says I wouldn't need to plan my life around hospital. I suppose I need to have the option of both eventually anyway. We'll see, if I have a Hickman in I'd probably rather use that for infliximab than jab myself every 2 weeks or whatever with

I have just booked a trip to Vegas for 5 nights next month so hoping it'll be ok!!!! I need a break

Bye for now

Update from my world..

Hey everyone!

Hope you are all well, and no one is suffering to badly with anything!

I have just had a short (ish) stint in hospital (5 days)

I'd been having some issues with going to the loo; tried everything but the situation just got worse. I started to feel really very sick all the time and knew I needed some help when I started to get a fever. I thought it'd be a case of a couple of days laxatives and I'd be cool! I was wrong!

I went down to the hospital and I was admitted straight away, the usual abdo x-rays, bloods and lots of issues cannulating and getting blood (still waiting on the hickman line) my blood pressure was low and heat rate was at 140BPM as was in quite a bit of pain, whole colon was spasming like no ones business and I had pain higher up. I was being pretty sick by this stage too.
The next thing I had a consultant down who said I needed to be catheterised and the old NG tube down immediately and lots of fluids as I was dehydrated and I'd need 2 different strong IV antibiotics.

It came back that I had a bowel infection from a crohn's exacerbation and my bowel just stopped working for awhile . Thankfully, a couple of days and it kicked back into action (with some laxatives) and I started to feel a bit more human! The doctors were pretty worried at some points with the severity of the tachycardia but I came out of it at least!!

Whilst I was in, I started getting the sores around my mouth and a real sore throat (which I put down to the NG tube, yuk!!!0 and a rash on my hands and feet.. I asked the doctor if he thought it was a reaction to the IV antibiotics (although I have had both of them before with no issues) and he thought no, it was probably a heat rash as I was quite warm. I was so glad to get home! I had to log on to work from home the next day; I hate letting them down! :(

The next day I felt completely snotty and coldy.. Rash was worse, so was sores around my mouth! I thought I'd ring my GP about getting something for my mouth as was worried about it getting infected with my lower immune system as it was very painful! I went across and they thought I had picked up hand, foot and mouth virus from the hospital!! How much bad luck can a person have??! lol I got steroid creams and antibiotic cream from my mouth (was already on 2 oral antibiotics) and told I was probably contagious, but people with a normal immune system would fight it off easily. I still didn't want to risk going into the office in case there were people with lowered systems, like me.. Or more importantly any pregnant women, so I have been working from home this week. I still feel full of a cold, it doesn't seem to be wanting to shift, but hopefully it will soon!

Bye for now x

Snooty Secretaries...

Have you ever wondered why medical secretaries/receptionists seem to think they are so much more important than everyone else? What gives them the right to speak to patients like something on the bottom of their shoe?

This week I called my new Rheumatologist's secretary to ask if she would book me in for some more steroid shots into my painful joints.. "Well, that isn't how it works.. Your GP needs to ask".. I didn't like her tone, she was rude and snooty! So I reply "it was him that told me to do it this way, and I believe what he says, no offence so could you pass on the message" obviously that went down like a lead balloon!! "All I can do us put it on his desk" which I pleasantly replied OK! I don't think she actually did it though.. Whilst I was on the phone, I decided to ask if the vascular referral had bee sent, it had been a week so it should be been,, Again, she snapped no at which point I thought I better go before I lost my patience.

I called again on Friday, then 10 days since my appointment so plenty of time to type up a referral letter. I've been in agony so I really need this sorting out.. Again, get the same snooty so-and-so, I politely asked if my letter had been sent over to the Vascular team as I'm struggling big time with my joints and can't start any treatment until this access is sorted. She again, snapped no it isn't done.. Unfortunately, this ticked me off and I snapped "It doesn't take 10 days to type a letter, this isn't good enough" she went quiet as if she had never been challenged before! Her reply was "It does as we have had a lot of staff leave, we are behind", my reply "that really isn't the fault of the patients though, is it? Why should we be made to suffer due to resourcing issues? I need that doing as I am suffering and he said it would be done promptly and like I said 10 days to type a letter isn't prompt" so that was it....... I am going to keep chasing until it's done!I can't go on in this pain, it's keeping me awake at night!

Anyway - moral of the story... Don't mess with me with I'm hormonal!!!! lol

I also need to find a new gastro consultant this week, he has been trying to overcharge bupa which is causing problems, and I've not been happy with him for awhile so just need to do a bit of research :) I'm sure it's the best decision anyway!

Hope you're all well!

Rheumatology Appointment

Good evening!

Time for an update on today's Rheumatology Appointment. I had to drive from Milton Keynes to Kettering (about an hour) and by the time I got there, my hands and left ankle were even more swollen and really painful. I only usually drive short distances now, but had to do it today..

I got there and waited awhile before the nurse took me through I hobbled in because my ankle was giving me jip, my consultant instantly noticed and asked to see the joint.. As soon as he saw it he asked if he could convince me to start on oral steroids, which I said no, as I really do dislike the side effects from them. He then went on to have a look at other joints and said would I consider getting cortisone steroid shots into the worst effected joints at the end of the appointment as it'd help me with the pain... I agreed to that one. I'd rather that than take regular oral steroids, that's for sure!!!! 

He was basically audio taping his letter to the vascular surgeons with me being there, so I could hear what he was saying. It was the first time I had heard him say that it was a definite diagnosis of Rheumatoid Arthritis based on blood and scans. He did say he was gobsmacked and disgusted that my gastro doctor finds it acceptable to only take blood whenever he feels like it when I'm on immuno drugs, and with femoral stabs for monitoring! He said he would want to be able to monitor my blood every month without fail, as it can be potentially life threatening. He also said using the central veins for long term monitoring is a no no, as it will then damage those veins like my arms and feet are. He said as soon as we figure out the access (hickman, picc or something) he will give me methotrexate to try, but he did say that some people really can't tolerate that (my gastro put a dampener on that saying it was "toxic" and pointing out all of the bad things about it!!!) I pray to god they don't meet each other as it'd be world war 3!
I tend to get sick anyway, so he's not holding up hope my body will cope with it.. The next stage is humira/infliximab which will be great for the crohns too, but hey we will see! Got to sort the access first...

Next, it was time to get shots.. The nurse and him took me through and did them. He said he couldn't believe I didn't even flinch, my response was when you've been through all the cannula problems and femoral stabs I have, that seemed pretty easy!! He said to the nurse he thought considering all I was going through I was upbeat and smiley, not always though I told him!! The nurse then piped up saying she also couldn't believe any doctor would find it acceptable to not monitor the bloods as per protocol for immunosuppresives.. But hey, my gastro can be a dick at the best of times.. Actually, make that pretty much always!!! They also gave me some super sexy wrist splints to wear... Aren't they lovely?! NOT!!! I bet you are all wishing you could join this club!! 

Talking of the gastro doc, I heard from his secretary today about my upcoming "procedure" (can hardly wait!!!) she said they are thinking 26th to be there at 4.30pm, for the op at 6pm.. I've emailed back questioning that; as if they think they are turfing me out of the hospital 2 hours after a GA they can think again. I was really sick last time and it took me some hours to come around, I can't come back around kids until I'm straight headed, especially as hubby will be in India then too. I'm wondering if i'll stay in the night... Knowing my gastro though, he'll say it's fine for me to leave that night!!! We will see! I don't think you are meant to be discharged right after a GA. Anyone know??!

Well, that's all from me.. Boring probably!! Next stop: Sehcat Bile Study Part 2 on Friday!!! ARRRRGGGHHHH!!

T

Forgot to say..

My gastro got back from holiday, and like I predicted I got a call to summon me in to see him. He said it's time we did a scope, a ton more biopsies and balloon dilation if needed.. So I'm going in a few weeks under GA with it being so invasive.. He gave me the lovely present of moviprep as a parting gift! Yum! Can hardly wait for that!!

Sehcat Bile Study

Hey all,

Thought it was time for an update..

I had my first part of the sehcat Bile Study test on Friday at Nuclear Medicine. I was feeling really nauseous anyway, so was worried about it coming straight back out!! It was pretty easy though.. I had to swallow a radioactive capsule mixed with bile salts.. the fact you can't touch it, and have to use a different toilet from others was abit scary though! what are they putting into my body??! :-o hehe

The technician explained that I had to go back at 1.30pm (this was 9.30) so I could have a scan so they could take a reading and then I go back on Friday for a second reading, in theory you still should have some in your system if the ileum is absorbing the bile right, if the reading is too low it means it's not working right. We are kinda expecting it to come back abnormal as it isn't absorbing B12 either plus the diahrea.. I'll be surprised if there is anything left with how much time I've spent in the bathroom anyway, but we'll see! He said it'd take a further 10 days to get the results to my consultant, it better not do as I'm a private patient!!!

On Wednesday I have to go to the NHS hospital to see the Rheumatoligist about my referal to the Vascular Surgeons about venous access, we'll see what that brings! My joints have been particularly painful this week but we'll get by.. We have too! I just hope it doesn't take long so I can get the treatment.

On a lighter note, my baby girl Matilda started school!! I can't believe how grown up she is!! So proud of my babies.. I just hope they don't pick up mummy's faulty genes! here she is.. Isn't she a cutie?

I also decided to put my skills making bath products into good use with making stuff and donating all of the money to Crohn's & Colitis UK.. Please join and have a look at my facebook pag, I want to get as manypeople on as possible.. Also for awareness and support for IBD'ers www.facebook.com/crohnscolitisfundraising
Chocolate lollipops will be next once the mould arrives! Hopefully I can raise some cash for it..

Until the next time..

T

Bleugh!!!!

Quick post today...

Boy, am I tired at the moment!! I'm due a B12 shot soon and my HB was on it's way down from recent bloods so maybe if and when they sort out some kind of venous access I might get another iron infusion. I have lost blood recently and the HB dropped about 5 points in a month.. We'll see though! I felt much better after my last infusion and jab for awhile though, it's just a shame it doesn't last!!! I am still waiting to hear off my gastro about things as he got off holiday today, won't hold my breath though but we do need to address the "blockages" I keep having as something isn't right.. Hoping when I start my treatment I'll see a big improvement in everything (I hope)

Hubby is going away on business alot in the next month or so, so I'll be at home with the kids alone (Charlie 5, Matilda 4 and Oliver 2! OUCH I hear you say!!) which is interesting when you are struggling with relapses of things!! I also have to work too.. Not quite sure how I'll do just yet, but I'm sure it'll be fine! I just hope he'll be OK in India.

The mouth ulcers I woke up with a few days ago, seem to be breeding by the day!! Lots of gels and mouthwashes to be had! Do any of you other crohnies get ulcers? My mouth gets real sore during relapses and when B12 gets low.. 

Lots of appointments...

Hey,

How are we all? I have been feeling a bit crappy recently.. So here goes..

I saw the Rheumatologist, who immediately thought it looked like Rheumatoid arthiritis in my hands.. He sent me off for a scan and bloods urgently and back in within a week.. As they can never get blood from my arms he said if it turned out I do have RA, I'll need to consider a hickman line or something similar so they can draw blood easily and regularly for both crohn's and that..

I woke up the day after my appointment feeling really ill, I had a raging temperature and felt sick. As the day went on it kept rising and I felt even more ill, I ended up at the hospital where my CRP, ESR inflammation levels were through the roof again, I'd had severe diarrhea and stomach pains since I came out of hospital anyway so had a feeling something was going down. They put me on IV antibiotics for 48 hrs with anti sickness drugs and of course, the line blew as usual so I persuaded them to let me try them orally and go home.. The more worrying thing was I completely stopped going to the toilet so was concerned the inflammation may of narrowed again, but I thought I'd see how it went..

Thursday, it was time to have the ultrasound on my hands, ready to see him on thursday.. The consultant radiologist did it for me, he pointed out bad inflammation in both wrists and other finger joints.. He hadn't even looked at my back etc so dread to think what that was like!! He pretty much told me there and then it looked like rheumatoid arthritis but said he'd write the report up.. 
The next day I saw the rheumatologist and he said it was the diagnosis he thought from both the bloods and scans.. Another problem to cope with! He did say he's seen other patients with inflammatory bowel diseases end up with RA too as it's the same thing as crohn's, my immune system attacking. Luckily, the treatment for Crohn;s and RA are the same so should kill two birds with one stone! As I'm already on azathioprine and mesasaline, and it's failed.. The next stage would be methotrexate for RA but it can have an adverse effect on crohn's of you have both conditions.. Next stage is anti TNF's.. AKA REmicade/infliximab or humira.. First of all, I need to be referred to vascular surgeons to sort my line out though.. I'm back to see him 12th to arrange it all.... 

In the mean time, still hadn't been to the toilet and my gastro was inconveniently on holiday!! I was starting to lose appetite and feel very uncomfortable and nauseous.. I'd tried laxido and lactulose but may as well of not bothered! I managed to get a hold of my GP and begged for picolax to try and move it along before it started making me vomit.. Luckily, they agreed... For anyone who has had picolax will know what it's like... dynamite!!! It took a fair whack to get it working but boy did it work.. The problem is it gives you griping stomach ache and once you start you really can't stop... Being more than a minute away from a loo is just not an option!!! So I was up and down to the toilet all night along.. and still going!!

Anyway, I have my sehcat bile study this week (I may as well move into the hospital I hear you say!!) and no doubt I will hear from my gastro about how bad my joints are, which probably means the inflammation in the bowel is quite bad too.... He can try all he likes to talk me into a scope, it won't work!!!!!!

Til next time :)

T

It's been awhile!

I know it's been ages since I posted.. I had a bit of a bad time of 5 weeks in hospital awhile ago.. But let's move on..

Things haven't been too bad.. Have a very upset stomach still which is normal I suppose!! MY best friend is the toilet most of the time lol But I'm back to working full time now 
I've been having regular bloods still and have a SEHCAT Bile study in 2 weeks to see if my ileum is managing to absorb the bile back in, so we'll see what that brings!

I also have to see a Rheumatologist on Friday as my hands are so bad at the moment, They're really swollen and sore. In the past it's only been my lower back and hips that have caused me the pain but we'll have to wait and see what they say..

Until next time.. 

B12 shots

Hey everyone!

Hope everyone is well! I thought it was about time for an update on the past couple of weeks.. I've been working in the office a lot more, which is great!

I'm still having quite a lot of pain from my bum as it just can't heal! The doctors said we can only do what we are doing.. Keep on with the creams and starting antibiotics if I can feel it may get into another infection. It is an actual pain in the ass!

I saw my GI for my azathioprine monitoring bloods. I went through with my hubby this time, as he never usually comes. I spoke to him about the extreme exhaustion and dizziness/weakness. I had some sores at the side of my mouth which he noticed as soon as I went in, he said this is a sign of anaemia. We decided if my iron levels were low, we'd sort out an iron infusion ASAP.

He couldn't get any veins in my arm to play along (they never do!) so he went for the femoral stab! He was so gentle compared to some I've had, and he got it in first shot! He couldn't believe it when I told him a young Dr on the Emergency Assessment Unit had attemped my arms tons, my foot a few times and then my groin 5 very painful times before I told him I'd had enough as he was useless! He didn't get any blood out! My consultant made it look easy peasy though! He said he'd rush through the results as he thought I looked really pale and tired. Whilst we were going through my medication, I mentioned I've been taking B12 since last year each day, he said he'd forgotten to tick the box on the blood request form for that, so he went and did it straight away as from looking on the computer system, for some reason it looks like no one has checked my B12 levels since last year when I was advised to take it because it was low because of the crohns being in my ileum.

The next afternoon, I hear from him as promised. He said my iron stores aren't too bad at the moment but my B12 & folic acid was very low which would explain all of the symptoms I've been having with the exhaustion, dizziness, sore mouth etc He said I was was to have 5 B12 jabs in a 2 week period to boost the levels, and then I'd need to have one every 3 months to try and maintain it at a normal level. Even though I had been taking extra B12 vitamins my body wasn't absorbing it from food or the vitamins because the ileum does all that. He said the shots bypass using the gut so they work much better is crohn's patients. If anyone has any experiences of the B12 shots, I'd love to hear how they worked for you :)

So, I had my first shot on Friday morning. I woke up feeling abit sick anyway but put it down to something I'd eaten the day before. I went over to the GP and felt really odd, got the shot and got a taxi to get home. I tried so hard not to spew in the taxi but after keeping it down twice, it just came up so forcefully! I was so embarassed, I can't even tell you how much!! He managed to pull over so I could carry on being sick by the road. By this stage my brain felt like it was trying to escape out of my eye & I had blurred vision which meant a migraine! I kept apoligizing to the polish taxi man even though hardly anything got on his car as it went over me and a some in my bag (yuk! not sorted that yet whilst feeling queasy) anyway, I was throwing up all day Friday through to Saturday midday ish! I couldn't keep any antisickness meds (or anything else) but thankfully the vomitting has stopped, still feel very sick and queasy but managing to take pills to help that. I still have a terrible headache today too and still feel totally spaced out. I'm hoping by tomorrow for work. I was meant to go to a Supernatural Convention this weekend too, but have felt way too ill! A 3 day migraine sucks!! ugh!!

Hi All!

It's been a little while since I posted, I hope everyone is OK.

I've not had the best time as of late. I have had a very troublesome anal fissure for years now, and with being constipated with IBS in large bowel and crohns in the small it never heals and instead just breaks open and bleeds and the cycle starts again, also the same with suffer recurrent mouth ulcers.I've been fortunate enough to avoid any anal infections/abscesses until now.

I managed to convince my GP to give me a chance with some strong antibiotics before I would go to the hospital, the last thing I wanted was someone poking at it!! I had augmenten (co-moxicklav, metronisadole and cipflexin along with cream. Sitting down was a real issue, luckily I worked from home so I could arrange the cushions and take plenty of rest. The worth thing about it is that I am going through a constipated phase at the moment, and obviously going to the toilet is hell! Could yell the house down it's so painful!!! My doctor gave me oramorph as he said he'd advise I had that for the pain. I have seen an improvement so hoping that means the drugs are working, I have to go back on Tuesday for my monthly azathioprine bloods so I'm guessing they'll check then. Hopefully, I won't need to go to any hospital, I am losing faith in Northampton General as they seem to be clueless about crohns etc, I am thinking of being referred to a hospital with a better reputation and proper crohn's nurses etc. My current consultant is anti any opiates for pain relief, which I think is appauling with how much pain

So, how did all these problems start?! According to my mother, I had tummy pains/problems quite frequently when I was younger, but no one bothered to check it out saying it was probably just a bug, as there were lots in school... Fair enough!! Life went on..

The first proper "flare" was when I was 18.. I was staying with my Dad at the time. I had been having some problems in the toilet area, being sick and crippling stomach pains for a couple of days. The doctor said it was a sickness bug and It'd pass. Over the next couple of days, I was still throwing up and getting weaker and weaker with the day, and the pain was becoming a real issue. I was spending most of the time in bed or on the "throne" lol

In the middle of the night, I woke up in a pure sweat, in the worst pain I'd been in yet, which sent me into a full blown panick attack.. I tried to get out of bed to get to my dads bedroom as I was worried about how I felt.. The next thing I remember is my dad bringing me around in the hallway and telling me the ambulance was on it's way - I had collapsed. I was rolling around in agony with my stomach and still throwing up.

The paramedics arrived and calmed me down and took me to the hospital Emergency department. I had the usual blood tests, anti sickness drugs and some fluids to replace the ones I had lost and of course.. pain relief, at last!! After the urine tests they decided I had a bad urine infection (hmmmm OK then!) and I'd be fine to go home with decent antibiotics after a few doses IV until the nausea etc was under control..... And I was sent home...

I had a load more of these exactly the same "attacks" but they were usually only a couple of times a year, so I never went to the doctors with them unless I was needing something for the pain.. They though I probably had a stomach ulcer, so I was given my 1st Gastroscopy.... This showed severe inflammation in the stomach and a small ulcer in duodenum, which they put down to gasritis caused by helicobacter pylori, so I was treated for this accordingly and told I'd need to take omeprazole of lansoprazole every day to help with the acid. And that was that... Sent off on my way again!!

From 2006-2010 I gave birth to 3 babies.. During my pregnancies I was really unwell. I couldn't even keep water down so I was in hospital in drips alot. My third baby was born a month early due to me having a uterine rupture, after this birth is when things started to get worse fast.....

I started to get more crippling pain, sickness and all the other shenangans of the god knows how many other admissions! (At this point I was at a different hospital) I lasted as long as I could before my husband called an ambulance as he couldn't listen to me in that pain any longer. They came out, got me sorted on entinox (gas and air) so they could get me down to the hospital..
A surgeon came to see me who thought I probably had gall stones so he'd arrange a scan.. Turns out, there were no gallstones but the gallbladder was inflammed.. So they took it out! Inside they found inflammed bile ducts also.. So I thought.. YAY! That should be it...

NOPE! about 3 months later, I again had to go to the emergency room in crippling pain.. Alls I kept saying "Is how can I be in pain?! They removed my gallbladder!" my surgeon requested an MRI, then later came to say there was an airpocket where the gallbladder used to be.. He thought I may of had another stomach ulcer pop causing it.. Another gastroscopy and down to theatre again... what did they find?! Nothing but inflammed bileducts! This is when my surgeon first suggested he thought I had crohns somewhere. Started me in steroids to see if that had an impact, which it did! So off I Went for another few months... With admissions in between

September 2010 came and, I had been really unwell for a couple of weeks with symptoms, but I woke up in agonising pain (and I've had 3 kids, this was worse!) during the night an was again rushed in...
They did a full body CT and were being shady about the results, lots of whispering etc. In the end a group of doctors came over to say the CT had shown up some abnormalities and it needed to be reviewed by the whole Multi-disiciplinary team on THURSDAY (this was monday!) I asked why this was and I'd like to know what they will be talking about, what had they found? The surgeon got abit snippy at this stage with me pushing for answers and said "there may be a carcenoid tumour in your bowels, we need an urgent gastroscopy and full colonoscopy... So that happened... No tumour THANK GOD!! but a nasty case of crohns in the terminal ileum and a few random spots in my caecum.My biopsies from my duodenum and stomach also showed signs of inflammation .

Now we had the diagnosis, I was referred to Gastroenterology properly to talk through medicines... I had been on prednisilone since July and he started me on mesasaline and took some bloods. For the first time in ALL of my admissions did someone check my blood for inflammation markers (apparently not a standard test) at this stage I had haemoglobin count of 9.3 and was tired and having spectacular dizzy spells etc.. And my CRP was up to 178 so still current inflammation despite the full dose of steroids and mesasaline. Not good! He gave me a couple of antibiotics to see if would work to bring it down, which it did slightly.

Next admission.. Same old, same old.. Except my HB levels had dropped to 8.3 and they wanted me to have a transfusion and to start the azathioprine urgently. So I started them in January.... The only worry the doctors had was that my veins had been so abused from the constant hospital stays in my pregnancies and the crohns that they were unviable and wouldn't give blood. You need regular tests on it in case your white cells drop a lot. The last few times I was in hospital, I needed a femoral line putting in. Luckily, my consultant said he would take blood from my groin for me so I could start the Azathioprine.

Since starting this, things have improved a lot.. I've managed to completely wean of the steroids after a while, which my bowel had been dependent on since the July before!! Everytime I weaned to 30mg and under I'd start a flare when I was using just those and mesasaline, so that's one step in the right direction.

Welcome.... About me!

Well, where do I start?! I guess telling you a little bit about myself would probably be good..

I'm Terri, 28 years young (ha!) from England, UK. I am a mummy to 3 beautiful children.. Charlie (5) Matilda (4) and Oliver (2)  (yup, close ages... hard work! lol) I've been with Howard for nearly 7 years and married since November 2010 when we eloped totally alone to Las Vegas! It was amazing!

I work in a Buying team for a large retailer, a stressful, busy job which the crohn's seems to complain about a lot! I spend a chunk of my time at/in either hospitals or doctors surgeries

After NINE!! years of mysterious "flares" of stomach problems and misdiagnosis after misdiagnosis (we'll go into that later) we FINALLY got the diagnosis of Crohn's Disease in September 2010 (found by accident ruling out, ,what they thought was a carcenoid tumour in my caecum.. (all will be told later)

Having absolutely no idea what Crohn's actually was at the time, I needed to get myself clued up... When I read the symptoms, I almost couldn't believe what I was reading.. It ALL fell right into place.. The mouth ulcers, the painful joints, the excruitating pains, toilet issues, anal fissures, nausea, sore eyes! But worst of all, it was a chronic disease with no cure... But my consultants assured me that with the treatment, patients can go into remission for years... Here's too hoping one day it'll happen!!

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