- Joined
- Apr 8, 2011
- Messages
- 275
Hi there, my names Siobhan and I have just found out I have Crohns colitis. I found this forum last week whilst searching for information on this condition. From looking through a lot of posts I felt that this would be a great community to be a part of, you all seems so helpful and welcoming. 
**Warning - I do ramble on a lot and give too much information so apologies in advance!!**
My story properly started back in September of last year, although if I really think aboot it I have always had 'problems' with my guts :stinks: and extreme tiredness, originally put down to having M.E as a teenager and then IBS in my early 20's.
Halfway through September I started getting stabbing pains directly under my right ribs whenever I ate or drank (hot drinks). At first I thought 'oh maybe I've drunk too much coffee or something and have irritated my stomach' so I cut that out but the pain was still there. Aboot a month later I woke up on a Monday with really stiff, painful ankles. Walking down stairs was the worst. I thought that it was probably because I had been rushing around the previous day in pretty little flat shoes that probably weren't the best choice of footwear! But the pain was still there over the following days and by Wednesday the last three toes on each foot became really painful, almost as if I had stubbed them and then someone had jumped on them. The following Saturday I woke up to find my right knee painful and swollen. I rested the majority of the weekend hoping that everything would be back to normal ready for work on Monday, but unfortunately it wasn't and work just exacerbated my symptoms and my knee ballooned to aboot four times it's original size.
By Tuesday I decided it was serious enough to make an emergency appt with my GP. I went in that afternoon and explained everything including the stomach pains and loosing half a stone (7lbs) even though I was still eating normally, as I believed that the two were linked (my GP didn't) He thought I might have pseudo-gout. Because of the stomach pains I had not taken any anti-inflammatory drugs but the GP prescribed me Ibuprofen 400mg tabs 1tds and Omeprazole 20mg caps 1d to limit any irritation to my stomach. He also arranged for me to have blood tests. He told me I should stay off work but being a stubborn little madam I tried to keep going to work...I lasted one and a half days and then had to ask him to sign me off! I took the Ibuprofen for aboot a week on the full dose and then 1 - 2 daily for the second week and made sure I took the Omeprazole daily as directed. The pain in my stomach was still there and I was also getting acid reflux which made eating horrible. My knee was still swollen and in a lot of pain and my left knee had now started swelling, so I made another appointment with the GP. He changed my anti-inflammatory to Diclofenac 50mg tabs 1tds and increased the Omeprazole 20mg caps to 2d. He said my blood tests showed inflammation but no infection so he decided to remove some synovial fluid from my knee to be tested for pseudo-gout (ouch!).
The tests on the synovial fluid just showed inflammation, no pseudo-gout so my GP referred me to the Rheumatologist but warned me that it would be a long time before I get seen because their waiting list was so long. I was still getting pains in my stomach when eating and drinking so I again mentioned this to my GP but he just said it was probably because of the Diclofenac and said just keep taking the Omeprazole and prescribed me some more. I didn't believe him aboot the Ibuprofen and Diclofenac because I was only taking 1 or 2 max a day (because neither of them made very much difference to my knee pain and did nothing for the swelling), always making sure I took them with food, but who am I to question my GP right! I carried on with the Omeprazole for another month which finally seemed to reduce the pain and reflux enough for me to tolerate food a bit better so I didn't bother asking for anything else.
By December I was still off work and I was getting more and more anxious to get back as I felt I was really letting my colleagues down and would also soon loose all my company sick pay so would be putting myself in financial difficulty. A friend of mine offered to do some alternative therapy (Bowen Technique) on my knees. I was all up for trying this so I arranged an appointment for that Sunday, the following days after the treatment my knees were much worse but by Wednesday the left knee started to feel a lot better and the right knee slightly better, I had two more sessions one before Christmas and one at the beginning of January. These helped me so much and I was able to walk around much better (my right knee was (and still is) bent slightly so to anyone else my walking looked very funny but to me it was such an improvement I didn't notice!).
I was so happy to be walking a bit better so I convinced my boss I was fine to come back to work on a phased return basis. I started off doing two weeks of half days. For the first week they let me do all the sit down jobs (I'm a pharmacy technician, so usually in my job I'll be doing a mixture of the following:- walking around unpacking or picking stock, standing in the same spot dispensing medication, running up and down the stairs to different departments to get medication for emergency prescriptions, sitting down at the computer producing labels for prescriptions, sitting down at the computer entering codes to order stock and most importantly trying to keep calm and organised when everything around me is stressful lol) in the second week I tried doing some stand up jobs (dispensing medication and picking stock) I was allowed to take my time doing this but it was quite clear that even going slow was not helping and my knee was causing me a lot of pain.
At the end of the second week I was feeling really sick and faint. I thought it was just my stomach playing up because I was on my period and typically I always get very loose urgent bowel motions around this time. So I tried drinking lots of water and did some sit down jobs. By the end of the morning I was feeling increasingly unwell, I knew I needed to get to the toilet very soon but my knee was causing me real trouble walking and I was also feeling so faint I didn't know if I would be able to make it across the loading bay, across the shop floor, up 3 flights of stairs and then across to the ladies changing rooms without having an accident. I tried 'riding' the urgency out, hoping that my stomach would settle down enough for me to walk all that way without an accident but all of a sudden I just felt really really sick and knew I needed to be in the loo! So I hobbled as fast as I could out of the room and across the loading bay, but my vision had blacked out and I knew I needed to stand still and try and stop myself from fainting. Luckily my colleague had followed me out of the room and ran up to me and literally shoved my head down between my legs lol! This helped me regain vision but I felt so sick she had to help me to the floor - all I wanted to do was kneel down but because of my stupid knees I couldn't so I kept having to be helped up off the floor then back down to the floor whilst my body decided which position was best. After aboot 15 minutes of this I was really anxious to get to the loo so I just said to my boss 'I need to get to the toilets cos I don't know which end it's going to come out!' How embarrassing but needs must and all that lol! So my boss helped me get up and she took me up in the stock lift - so glad I work in a shop! I spent aboot 15 mins in the loo with my boss standing outside making sure I was okay - again major embarrassment because as predicted it was diarrhoea. The Saturday after that I woke up and my right knee had swollen up again, I thought 'great here we go again' but I didn't want to be off work so on the Monday I went to work on crutches only to be told by the big boss - you're not allowed to be here on crutches so I got sent home. I arranged for another emergency appt with my GP. I explained what had happened in work with my stomach but again he thought they weren't related to my knee. He signed me off work for another two weeks and he managed to get hold of the rheumatology dept the next day and get me an emergency appt for the Wednesday. At this appt I had to go through everything again I mentioned all the stomach problems but again the Dr took no notice. After taking aboot ten vials of blood from me, a urine sample and pushing really hard down on my knee saying 'try and straighten your knee!'....OMG! I so wanted to punch him in the face for the pain he was causing me lol. He decided to give me a cortisone injection into the knee. Wow how I loved that cortisone injection! I was actually able to walk properly by the next day. Unfortunately by the Saturday my left knee decided it was feeling a little left out so started to swell up and by the Monday it was well and truely huge. I got back in contact with my GP and he arranged for me to come in on the Thursday where he removed 100ml of synovial fluid and gave me 1ml of cortisone.
I went back to work the following week doing four half days and then went back to full time. By the next Monday I was having a really hard time eating and drinking. I was getting stabbing pains in my intestines and stomach, loads of mouth ulcers, diarrhoea and really bad reflux which felt like my whole chest was being crushed. Even drinking water was causing me pain. I had lost another half stone (7lbs) in two weeks, I knew this wasn't right and by the Saturday my right knee and ankle started swelling again. On the Monday I arranged an emergency appt for the morning with the GP and explained everything. He prescribed me Lansoprazole 30mg c 1d (said I could take 2d if I felt that 1d wasn't helping so from the second day I took 2d). He looked at the letter from the rheumatology Dr and said it looks like you have sero-negative inflammatory arthritis and they will probably start you on Sulfasalazine which will help with the inflammation. I asked my GP if he thought I might have something like Crohn's as all this started off with stomach problems but he said no because in all the people he's seen with Crohn's having arthritis didn't happen. Aaaaaarrrrrgggghhh!!! I was so angry at him because I knew it was more than arthritis and I knew that arthritis could present as a secondary symptom in people with Crohn's disease as I had done a lot of researching online but all he could see was the arthritis and seemed to think the stomach problems were just GORD.
I went straight from the GP to work but was in so much pain I almost cried so many times through the morning, but me being me I didn't want to cause any fuss so made sure I kept my tears at bay so as not to worry any of my colleagues. By lunchtime I was so exhausted I had to spend a long time on the loo with diarrhoea and then had to walk back downstairs to the shop floor to get something to eat. On the way down the stairs I was struggling to keep my tears in. My colleague was behind me and asked me 'are you okay?'....oops those fatal words! haha! queue me blubbering like a fool but saying it's okay I'll be okay! So off I went to get some food. I'm not completely sure but I reckon my colleague went off to find my boss and tell her to go see me cos 20 mins later I was back upstairs in the staff canteen pushing my food around the tub willing myself to eat it and up pops my boss. 'Siobhan you're not okay, go home and get some rest' oh how I loved her for telling me to go home! I really felt like a failure for letting my colleagues down again but was so grateful to be sent home. When I got home my partner was there and as soon as I saw him I just started crying.
The next two weeks are a bit of a blur. I was mostly in bed in pain with my stomach, knees, ankle and bum or asleep. I was being woken up by my stomach with the urgent need to get to the toilet, needless to say I didn't always make it - how demoralising! or woken up in pain because of the haemorrhoid pulsing. I was now also passing blood in mucus. I did have one time where all I passed was blood - I think this was from the fissure or haemorrhoid but I'm not sure. I was mainly only able to have cup-a-soups sometimes with bread. I did try eating a meal of chicken, potatoes, carrots and broccoli. I wasn't able to eat much of it but what really shocked me aboot it was that 4 hours later I had awful cramping pains in my stomach. So off I went to the loo knowing what was aboot to come next but what I didn't expect to see was the whole meal back out of me looking basically the same as when it went in! ew!! I had now lost almost another stone (14lbs) and was looking very weak and feeble, so much so that one day my partner came home from work and thought I was dead because I was asleep and didn't respond to his call!
He was extremely worried for my health and very angry at my GP for not taking things seriously so after work one day he argued with me for aboot an hour that I was going to A+E whether I liked it or not. I really didn't wanna go cos I knew they'd be like why have you come here and not gone to your GP, which the triage nurse did say, but I was so emotional I just started crying and pointed to Sam and said he made me! lol Sam explained how worried he was for me and that he was working in the day so couldn't get me to the GP to which the triage nurse replyed 'Can't she get herself there?!' haha! Was that the wrong thing to say to Sam or what! He just gave her this look as if to say 'Are you serious?? did you not just see her hobbling in to this room?!' To my amazement the triage nurse then changed her attitude and led us in to a side room. We waited there for aboot four hours. The only contact we had with anyone was a nurse coming in and taking some bloods from me. Eventually the Dr came in and asked me to explain everything thats been happening. I did and he examined my stomach and knee. He was such a lovely Dr, very good bedside manner. He said that from what I've said he thinks I have a textbook case of Inflammatory Bowel Disease. He told me I was anaemic and admitted me overnight so they could run some tests and do a load of x-rays. In the morning I saw the consultant Dr who agreed that it looks like an IBD but instead of referring me to the gastroenterologist himself he would advise my rheumatologist to arrange all the neccessary tests as I was due to see her the following Monday. Then they discharged me - I was so pleased to be going home I hadn't slept all night and just wanted to get to my own bed.
The following Monday I went to my rheumatologist appt but the consultant I was supposed to see was off ill so I saw her registrar instead. He was very good. He asked me to explain everything from the beginning. He sent me for more blood tests and x-rays. He said that I could have Crohn's or Behçets and that he'd urgently refer me for a colonoscopy (but couldn't confirm how quickly they would see me) He then said that the treatment I would have would be Sulfasalazine and prescribed it for me. He said that I would have to have the drug monitoring team do blood tests on me before I could start taking it and that they would be in touch in 6 weeks time!! So I was sent home with a pot to take a stool sample - joy! and meds that I wasn't allowed to take! haha!! Everytime I saw them I would think to myself, I would be getting better if I could take them.
The next day I started getting really pulsing pains in my perineal area. I could feel two lumps just above my haemorrhoid. This got worse over the next few days and by the Sunday the lumps had moved up to the side of my vagina. OMG I was in so much pain especially after any diarrhoea. I then started developing ulcers in my vagina again OMG the pain I was in from this! I would scream on the loo whenever I had a wee or diarrhoea and then go and lay down and just cry. I looked up Behçets disease and felt very very sorry for myself I hoped that I didn't have Behçets and that it was Crohn's instead and even more so that it was none of the above!! I called my surgery on the Wednesday and had an emergency appointment with a female GP - I was so happy that I didn't have to see my normal Dr, I had lost all faith in him. She straight away said it might be a Bartholin's cyst and that she also thinks I might have Behçets. She rang up the emergency gynecology dept and arranged for me to go and see them that day. She also said she would chase up the gastroenterologist aboot the colonoscopy. I asked her aboot prescribing me nutritional supplements as I had lost so much weight and as more and more things were going wrong I knew I needed some sort of nutrition in me to help me fight whatever was happening to my body. She couldn't prescribe me anything as you have to be started off on supplements by a dietician!! ha! how ridiculous! She urgently referred me to a dietician (My appointments on the 26th of April and she referred me on the 16th of March!). I spent 7 hours waiting to be seen at the emergency gyne dept, I didn't mind cos I knew that the people being put ahead of me must be in much worse pain than me. Once I was seen they took swabs of the ulcers (these came back normal so that ruled out Herpes but pointed more to Behçets) and tried to examine me, but I was in so much pain this didn't go too well! The Dr who saw me said he didn't think it was a Bartholin's cyst or a fistula so I wouldn't need surgery there and then. He said I wouldn't need antibiotics either and as they think I might have Behçets it would be best to not give me any treatment and leave me in the hands of my rheumatologist who I'd be seeing again on the 11th of April. They gave me an emergency number to contact them on if I needed and told me I needed to eat as I had ketones in my urine sample which ment I was malnorished - no s**t sherlock lol! You only had to look at me to see I was malnorished!
I went home and thought right if I need to eat I'm going to eat - so my partner took me to get a McDonalds cheeseburger, fries and mcflurry - why did I think this would be a good idea??? I suppose it's just cos I was so angry at my body for causing me all these problems I was kinda saying f**k you to it, I knew it was gonna be painful to eat but I was sick of not being able to eat. So obviously big mistake haha! 30 mins after trying to eat the food (I literally stuffed as much down my throat as possible even though it hurt me - haha! take that stomach!) I was on the loo doubled up in pain and then yup you've guessed it, diarrhoea! The next day I received a phonecall from the gastroenterology dept asking if I could come in next Wednesday to see the gastroenterologist. I was so thankful to my GP for chasing them up for me and moving things along so quickly.
By the Friday night I was in so much pain with the lumps. I was woken up in the night as usual with the need to go to the loo this time having a full toilet full of blood (not sure if it was from the fissure, haemorrhoid or furthur up my GI tract), and then diarrhoea. Afterwards I was in so much pain. I was sobbing my little heart out for about 2 hours cos the pulsing pain was so bad. The next night the pain started again and after 3 hours I gave up and we called the emergency gyne number. They told us to come in and I was again examined by a Dr. She again said it wasn't an abcess or fistula and told me I should take some Diclofenac 50mg tabs 1tds for the pain, and also some Lansoprazole 30mg caps 1d to protect my stomach. I told her that I was soon going to have a colonoscopy and had read that you shouldn't take PPI's for a month before having a colonoscopy (I read it on an nhs trusts information leaflet aboot preparing for colonoscopies). She had no idea aboot this and just told me to take the Lansoprazole. I took the Diclofenac, making sure I took it with food but I didn't take the Lansoprazole because I thought if it is true then I don't want to delay the colonoscopy unnecessarily. The Diclofenac helped a little bit with the pain but didn't reduce the swelling. It had the added bonus of slightly easing the pain in my knee though which was nice.
The following Wednesday I went to see the gastroenterologist. He examined me and said straight away that the lumps were a fistula forming. He was really annoyed that they told me to take Diclofenac as apparently it's the worst thing to take if you have Crohn's. He prescribed me Ciprofloxacin 500mg tabs 1bd, referred me for an urgent MRI of my pelvis and managed to arrange a colonoscopy 10 days later! wow - apart from my original GP and a few of the Drs in the hospital I am so impressed with how quickly and efficiently everyone else has worked. The Ciprofloxacin made a major difference within a couple of days - yey!, but unfortunately my knees and right ankle swelled up with avengence and my left wrist decided to join in the fun! I think it must have been a rebound reaction from coming off the Diclofenac. I couldn't move my legs without severe pain. My partner had to lift me out of bed when I needed to go to the toilet. Unfortunately one day he popped out to the shops and then his allotment. I couldn't get myself to the toilet in time - queue more pain and embarrassment for me, but I eventually got myself up and to the bathroom. I cleaned myself up and then ran a bath and stayed in there for aboot 3 hours until my partner came home lol!
Now was time for my bowel prep what an evil thing that is! The senna wasn't so bad but what evil pig came up with Citramag!! That stuff is lethal! Firstly it tastes disgusting, I thought I was gonna puke it all back up! and then comes the after effects of it! Hope I never have to go through that again but I have a sneeky suspicion that we may meet again a few years down the line! Unfortunately for me I wasn't quick enough getting up and into the toilet for the first bowel movement! This is how my part fistula became a full fistula, as I'm sure you can imagine I was in agonising pain and was screaming and crying for a long time. I cleaned myself up and made a bed for myself in the bathroom. I spent the rest of the night not getting much sleep and in the morning when it came to take the second sachet I really didn't want to so I just took half of it. After an hour nothing was happening so I thought 'man up and take the other half Siobhan, you're only causing yourself more problems if this doesn't work' so I took the other half and well lets just say things started moving along haha!
The colonoscopy caused me quite a bit of pain so they upped the painkillers. I thought I was awake for most of it but afterwards I realised I had forgotten chunks of the evening - I HATE forgetting things so tried for ages to piece things together lol! So on the 1st of April I had my colonoscopy and the initial results showed Crohn's - if only someone would come out and say 'haha! only joking April Fools!!!' but that's wishful thinking :wink: The gastroenterologist took 8 biopsies and lots of pictures. That night I had a disturbed sleep and was woken up the next day after aboot 7 hours sleep but I felt really awake and alive - this was very odd to me because even before all this I've always been tired even after having an 8 hour sleep. For the first part of the day I just sat in bed watching TV. Then I needed to go to the loo - uh oh! haha! the night before I had had two bloody bowel movements so I thought I might have another one like that but to my complete shock!! I had a NORMAL bowel movement!!! very weird after 8 weeks of diarrhoea! The next couple of days I felt really tired and had pains in my intestines but continued to have proper bowel movements - I wonder if having the bowel prep reset my bowels?
On the Monday I got a call from the MRI dept saying they had a cancellation that evening and would I like to come in. So that evening I went into the hospital. Walking from the car park to the x-ray dept (aboot a 5 min walk for an able bodied person) I felt really sick and short of breath, it was quite a cold evening also and my hands turned bluey white. All the colour had drained from me and as soon as I got to the x-ray waiting area I just lay down on the seats for a while feeling rough. Eventually we were called to go through to the MRI dept and my partner had to support me walking to there. Once there I got changed into the lovely hospital gowns :wink: and was taken through for the MRI. How weird the MRI is - with all the noises it makes it made me think of a choir , like a glee choir lol going do do do do do, be be be be, die die die die die etc all at the same time. after aboot 30 - 40 mins in the MRI I came out and got changed. A porter took me down to the pick up area and my partner brought the car round. By this point I felt so much better, I haven't a clue why I felt so rough.
The next day I went for my follow up with the gastroenterologist. He said that he was 99% sure I had Crohn's colitis and said he wanted to start me on stronger meds straight away. He prescribed me Prednisolone 5mg tabs 8d for 1 week, then 6d for 1 week then reducing by 1 tab a week. Calcichew D3 Forte tabs 2d, Azathioprine 50mg tabs 1d and he's prescribed me more Ciprofloxacin 500mg tabs 1bd as they seem to really be helping my fistula and my eating - I can eat with very very little pain now - I'm a bit like a monster haha!! I'm like give me food!!! all your food!!! I don't care if I can't eat much of it I still want it!! haha! I guess my stomach has shrunk a lot so it's definately a case of my eyes are bigger than my belly! My gastroenterologist is also gonna start me on Infliximab in 4 weeks - I'm really nervous aboot this and also a little upset and confused cos before all this happened my plans for this year were to get pregnant - I had already prepared myself for having a harder time getting pregnant because I was diagnosed with PCOS last August but I never thought I'd have this to deal with as well.
The Prednisolone really seems to be helping me with my arthritis and the Ciprofloxacin are definately helping with my stomach and fistula pain. After reading other people's posts on there experiences I feel very lucky to have got off so lightly. I really hope that I will not have severe problems with Crohn's and can get back to normal life as soon as possible. I am quite confused at the moment and according to my partner very temperamental - 'no I'm not!' I shout back hehe!! Some days I think as soon as this treatment has kicked in everything will be back to normal and I'll never get sick again and then other days I start thinking all doom and gloom aboot it. I'm trying to keep positive but I think it's gonna take me a long while to come to terms with it all.
My partner has been looking into alternative therapies for me and has found a few treatments with different mushrooms, one of which is Kefir which he is going to start growing for me. I have previously taken Kefir for IBS and it did definitely help with my symptoms but I wasn't too fond of the taste so after aboot a month I stopped taking it. I'm sure I can flavour the milk to make it better though. Have any of you guys tried any mushroom therapies? Or any other alternative therapies? and were they helpful?
Right I have finally come to the end of my story, Thank you for letting me tell it, and well done to anyone who managed to read till the end! As I said at the beginning I do ramble and as you can see I wasn't lying lol!
Siobhan xx
**Warning - I do ramble on a lot and give too much information so apologies in advance!!**
My story properly started back in September of last year, although if I really think aboot it I have always had 'problems' with my guts :stinks: and extreme tiredness, originally put down to having M.E as a teenager and then IBS in my early 20's.
Halfway through September I started getting stabbing pains directly under my right ribs whenever I ate or drank (hot drinks). At first I thought 'oh maybe I've drunk too much coffee or something and have irritated my stomach' so I cut that out but the pain was still there. Aboot a month later I woke up on a Monday with really stiff, painful ankles. Walking down stairs was the worst. I thought that it was probably because I had been rushing around the previous day in pretty little flat shoes that probably weren't the best choice of footwear! But the pain was still there over the following days and by Wednesday the last three toes on each foot became really painful, almost as if I had stubbed them and then someone had jumped on them. The following Saturday I woke up to find my right knee painful and swollen. I rested the majority of the weekend hoping that everything would be back to normal ready for work on Monday, but unfortunately it wasn't and work just exacerbated my symptoms and my knee ballooned to aboot four times it's original size.
By Tuesday I decided it was serious enough to make an emergency appt with my GP. I went in that afternoon and explained everything including the stomach pains and loosing half a stone (7lbs) even though I was still eating normally, as I believed that the two were linked (my GP didn't) He thought I might have pseudo-gout. Because of the stomach pains I had not taken any anti-inflammatory drugs but the GP prescribed me Ibuprofen 400mg tabs 1tds and Omeprazole 20mg caps 1d to limit any irritation to my stomach. He also arranged for me to have blood tests. He told me I should stay off work but being a stubborn little madam I tried to keep going to work...I lasted one and a half days and then had to ask him to sign me off! I took the Ibuprofen for aboot a week on the full dose and then 1 - 2 daily for the second week and made sure I took the Omeprazole daily as directed. The pain in my stomach was still there and I was also getting acid reflux which made eating horrible. My knee was still swollen and in a lot of pain and my left knee had now started swelling, so I made another appointment with the GP. He changed my anti-inflammatory to Diclofenac 50mg tabs 1tds and increased the Omeprazole 20mg caps to 2d. He said my blood tests showed inflammation but no infection so he decided to remove some synovial fluid from my knee to be tested for pseudo-gout (ouch!).
The tests on the synovial fluid just showed inflammation, no pseudo-gout so my GP referred me to the Rheumatologist but warned me that it would be a long time before I get seen because their waiting list was so long. I was still getting pains in my stomach when eating and drinking so I again mentioned this to my GP but he just said it was probably because of the Diclofenac and said just keep taking the Omeprazole and prescribed me some more. I didn't believe him aboot the Ibuprofen and Diclofenac because I was only taking 1 or 2 max a day (because neither of them made very much difference to my knee pain and did nothing for the swelling), always making sure I took them with food, but who am I to question my GP right! I carried on with the Omeprazole for another month which finally seemed to reduce the pain and reflux enough for me to tolerate food a bit better so I didn't bother asking for anything else.
By December I was still off work and I was getting more and more anxious to get back as I felt I was really letting my colleagues down and would also soon loose all my company sick pay so would be putting myself in financial difficulty. A friend of mine offered to do some alternative therapy (Bowen Technique) on my knees. I was all up for trying this so I arranged an appointment for that Sunday, the following days after the treatment my knees were much worse but by Wednesday the left knee started to feel a lot better and the right knee slightly better, I had two more sessions one before Christmas and one at the beginning of January. These helped me so much and I was able to walk around much better (my right knee was (and still is) bent slightly so to anyone else my walking looked very funny but to me it was such an improvement I didn't notice!).
I was so happy to be walking a bit better so I convinced my boss I was fine to come back to work on a phased return basis. I started off doing two weeks of half days. For the first week they let me do all the sit down jobs (I'm a pharmacy technician, so usually in my job I'll be doing a mixture of the following:- walking around unpacking or picking stock, standing in the same spot dispensing medication, running up and down the stairs to different departments to get medication for emergency prescriptions, sitting down at the computer producing labels for prescriptions, sitting down at the computer entering codes to order stock and most importantly trying to keep calm and organised when everything around me is stressful lol) in the second week I tried doing some stand up jobs (dispensing medication and picking stock) I was allowed to take my time doing this but it was quite clear that even going slow was not helping and my knee was causing me a lot of pain.
At the end of the second week I was feeling really sick and faint. I thought it was just my stomach playing up because I was on my period and typically I always get very loose urgent bowel motions around this time. So I tried drinking lots of water and did some sit down jobs. By the end of the morning I was feeling increasingly unwell, I knew I needed to get to the toilet very soon but my knee was causing me real trouble walking and I was also feeling so faint I didn't know if I would be able to make it across the loading bay, across the shop floor, up 3 flights of stairs and then across to the ladies changing rooms without having an accident. I tried 'riding' the urgency out, hoping that my stomach would settle down enough for me to walk all that way without an accident but all of a sudden I just felt really really sick and knew I needed to be in the loo! So I hobbled as fast as I could out of the room and across the loading bay, but my vision had blacked out and I knew I needed to stand still and try and stop myself from fainting. Luckily my colleague had followed me out of the room and ran up to me and literally shoved my head down between my legs lol! This helped me regain vision but I felt so sick she had to help me to the floor - all I wanted to do was kneel down but because of my stupid knees I couldn't so I kept having to be helped up off the floor then back down to the floor whilst my body decided which position was best. After aboot 15 minutes of this I was really anxious to get to the loo so I just said to my boss 'I need to get to the toilets cos I don't know which end it's going to come out!' How embarrassing but needs must and all that lol! So my boss helped me get up and she took me up in the stock lift - so glad I work in a shop! I spent aboot 15 mins in the loo with my boss standing outside making sure I was okay - again major embarrassment because as predicted it was diarrhoea. The Saturday after that I woke up and my right knee had swollen up again, I thought 'great here we go again' but I didn't want to be off work so on the Monday I went to work on crutches only to be told by the big boss - you're not allowed to be here on crutches so I got sent home. I arranged for another emergency appt with my GP. I explained what had happened in work with my stomach but again he thought they weren't related to my knee. He signed me off work for another two weeks and he managed to get hold of the rheumatology dept the next day and get me an emergency appt for the Wednesday. At this appt I had to go through everything again I mentioned all the stomach problems but again the Dr took no notice. After taking aboot ten vials of blood from me, a urine sample and pushing really hard down on my knee saying 'try and straighten your knee!'....OMG! I so wanted to punch him in the face for the pain he was causing me lol. He decided to give me a cortisone injection into the knee. Wow how I loved that cortisone injection! I was actually able to walk properly by the next day. Unfortunately by the Saturday my left knee decided it was feeling a little left out so started to swell up and by the Monday it was well and truely huge. I got back in contact with my GP and he arranged for me to come in on the Thursday where he removed 100ml of synovial fluid and gave me 1ml of cortisone.
I went back to work the following week doing four half days and then went back to full time. By the next Monday I was having a really hard time eating and drinking. I was getting stabbing pains in my intestines and stomach, loads of mouth ulcers, diarrhoea and really bad reflux which felt like my whole chest was being crushed. Even drinking water was causing me pain. I had lost another half stone (7lbs) in two weeks, I knew this wasn't right and by the Saturday my right knee and ankle started swelling again. On the Monday I arranged an emergency appt for the morning with the GP and explained everything. He prescribed me Lansoprazole 30mg c 1d (said I could take 2d if I felt that 1d wasn't helping so from the second day I took 2d). He looked at the letter from the rheumatology Dr and said it looks like you have sero-negative inflammatory arthritis and they will probably start you on Sulfasalazine which will help with the inflammation. I asked my GP if he thought I might have something like Crohn's as all this started off with stomach problems but he said no because in all the people he's seen with Crohn's having arthritis didn't happen. Aaaaaarrrrrgggghhh!!! I was so angry at him because I knew it was more than arthritis and I knew that arthritis could present as a secondary symptom in people with Crohn's disease as I had done a lot of researching online but all he could see was the arthritis and seemed to think the stomach problems were just GORD.
I went straight from the GP to work but was in so much pain I almost cried so many times through the morning, but me being me I didn't want to cause any fuss so made sure I kept my tears at bay so as not to worry any of my colleagues. By lunchtime I was so exhausted I had to spend a long time on the loo with diarrhoea and then had to walk back downstairs to the shop floor to get something to eat. On the way down the stairs I was struggling to keep my tears in. My colleague was behind me and asked me 'are you okay?'....oops those fatal words! haha! queue me blubbering like a fool but saying it's okay I'll be okay! So off I went to get some food. I'm not completely sure but I reckon my colleague went off to find my boss and tell her to go see me cos 20 mins later I was back upstairs in the staff canteen pushing my food around the tub willing myself to eat it and up pops my boss. 'Siobhan you're not okay, go home and get some rest' oh how I loved her for telling me to go home! I really felt like a failure for letting my colleagues down again but was so grateful to be sent home. When I got home my partner was there and as soon as I saw him I just started crying.
The next two weeks are a bit of a blur. I was mostly in bed in pain with my stomach, knees, ankle and bum or asleep. I was being woken up by my stomach with the urgent need to get to the toilet, needless to say I didn't always make it - how demoralising! or woken up in pain because of the haemorrhoid pulsing. I was now also passing blood in mucus. I did have one time where all I passed was blood - I think this was from the fissure or haemorrhoid but I'm not sure. I was mainly only able to have cup-a-soups sometimes with bread. I did try eating a meal of chicken, potatoes, carrots and broccoli. I wasn't able to eat much of it but what really shocked me aboot it was that 4 hours later I had awful cramping pains in my stomach. So off I went to the loo knowing what was aboot to come next but what I didn't expect to see was the whole meal back out of me looking basically the same as when it went in! ew!! I had now lost almost another stone (14lbs) and was looking very weak and feeble, so much so that one day my partner came home from work and thought I was dead because I was asleep and didn't respond to his call!
He was extremely worried for my health and very angry at my GP for not taking things seriously so after work one day he argued with me for aboot an hour that I was going to A+E whether I liked it or not. I really didn't wanna go cos I knew they'd be like why have you come here and not gone to your GP, which the triage nurse did say, but I was so emotional I just started crying and pointed to Sam and said he made me! lol Sam explained how worried he was for me and that he was working in the day so couldn't get me to the GP to which the triage nurse replyed 'Can't she get herself there?!' haha! Was that the wrong thing to say to Sam or what! He just gave her this look as if to say 'Are you serious?? did you not just see her hobbling in to this room?!' To my amazement the triage nurse then changed her attitude and led us in to a side room. We waited there for aboot four hours. The only contact we had with anyone was a nurse coming in and taking some bloods from me. Eventually the Dr came in and asked me to explain everything thats been happening. I did and he examined my stomach and knee. He was such a lovely Dr, very good bedside manner. He said that from what I've said he thinks I have a textbook case of Inflammatory Bowel Disease. He told me I was anaemic and admitted me overnight so they could run some tests and do a load of x-rays. In the morning I saw the consultant Dr who agreed that it looks like an IBD but instead of referring me to the gastroenterologist himself he would advise my rheumatologist to arrange all the neccessary tests as I was due to see her the following Monday. Then they discharged me - I was so pleased to be going home I hadn't slept all night and just wanted to get to my own bed.
The following Monday I went to my rheumatologist appt but the consultant I was supposed to see was off ill so I saw her registrar instead. He was very good. He asked me to explain everything from the beginning. He sent me for more blood tests and x-rays. He said that I could have Crohn's or Behçets and that he'd urgently refer me for a colonoscopy (but couldn't confirm how quickly they would see me) He then said that the treatment I would have would be Sulfasalazine and prescribed it for me. He said that I would have to have the drug monitoring team do blood tests on me before I could start taking it and that they would be in touch in 6 weeks time!! So I was sent home with a pot to take a stool sample - joy! and meds that I wasn't allowed to take! haha!! Everytime I saw them I would think to myself, I would be getting better if I could take them.
The next day I started getting really pulsing pains in my perineal area. I could feel two lumps just above my haemorrhoid. This got worse over the next few days and by the Sunday the lumps had moved up to the side of my vagina. OMG I was in so much pain especially after any diarrhoea. I then started developing ulcers in my vagina again OMG the pain I was in from this! I would scream on the loo whenever I had a wee or diarrhoea and then go and lay down and just cry. I looked up Behçets disease and felt very very sorry for myself I hoped that I didn't have Behçets and that it was Crohn's instead and even more so that it was none of the above!! I called my surgery on the Wednesday and had an emergency appointment with a female GP - I was so happy that I didn't have to see my normal Dr, I had lost all faith in him. She straight away said it might be a Bartholin's cyst and that she also thinks I might have Behçets. She rang up the emergency gynecology dept and arranged for me to go and see them that day. She also said she would chase up the gastroenterologist aboot the colonoscopy. I asked her aboot prescribing me nutritional supplements as I had lost so much weight and as more and more things were going wrong I knew I needed some sort of nutrition in me to help me fight whatever was happening to my body. She couldn't prescribe me anything as you have to be started off on supplements by a dietician!! ha! how ridiculous! She urgently referred me to a dietician (My appointments on the 26th of April and she referred me on the 16th of March!). I spent 7 hours waiting to be seen at the emergency gyne dept, I didn't mind cos I knew that the people being put ahead of me must be in much worse pain than me. Once I was seen they took swabs of the ulcers (these came back normal so that ruled out Herpes but pointed more to Behçets) and tried to examine me, but I was in so much pain this didn't go too well! The Dr who saw me said he didn't think it was a Bartholin's cyst or a fistula so I wouldn't need surgery there and then. He said I wouldn't need antibiotics either and as they think I might have Behçets it would be best to not give me any treatment and leave me in the hands of my rheumatologist who I'd be seeing again on the 11th of April. They gave me an emergency number to contact them on if I needed and told me I needed to eat as I had ketones in my urine sample which ment I was malnorished - no s**t sherlock lol! You only had to look at me to see I was malnorished!
I went home and thought right if I need to eat I'm going to eat - so my partner took me to get a McDonalds cheeseburger, fries and mcflurry - why did I think this would be a good idea??? I suppose it's just cos I was so angry at my body for causing me all these problems I was kinda saying f**k you to it, I knew it was gonna be painful to eat but I was sick of not being able to eat. So obviously big mistake haha! 30 mins after trying to eat the food (I literally stuffed as much down my throat as possible even though it hurt me - haha! take that stomach!) I was on the loo doubled up in pain and then yup you've guessed it, diarrhoea! The next day I received a phonecall from the gastroenterology dept asking if I could come in next Wednesday to see the gastroenterologist. I was so thankful to my GP for chasing them up for me and moving things along so quickly.
By the Friday night I was in so much pain with the lumps. I was woken up in the night as usual with the need to go to the loo this time having a full toilet full of blood (not sure if it was from the fissure, haemorrhoid or furthur up my GI tract), and then diarrhoea. Afterwards I was in so much pain. I was sobbing my little heart out for about 2 hours cos the pulsing pain was so bad. The next night the pain started again and after 3 hours I gave up and we called the emergency gyne number. They told us to come in and I was again examined by a Dr. She again said it wasn't an abcess or fistula and told me I should take some Diclofenac 50mg tabs 1tds for the pain, and also some Lansoprazole 30mg caps 1d to protect my stomach. I told her that I was soon going to have a colonoscopy and had read that you shouldn't take PPI's for a month before having a colonoscopy (I read it on an nhs trusts information leaflet aboot preparing for colonoscopies). She had no idea aboot this and just told me to take the Lansoprazole. I took the Diclofenac, making sure I took it with food but I didn't take the Lansoprazole because I thought if it is true then I don't want to delay the colonoscopy unnecessarily. The Diclofenac helped a little bit with the pain but didn't reduce the swelling. It had the added bonus of slightly easing the pain in my knee though which was nice.
The following Wednesday I went to see the gastroenterologist. He examined me and said straight away that the lumps were a fistula forming. He was really annoyed that they told me to take Diclofenac as apparently it's the worst thing to take if you have Crohn's. He prescribed me Ciprofloxacin 500mg tabs 1bd, referred me for an urgent MRI of my pelvis and managed to arrange a colonoscopy 10 days later! wow - apart from my original GP and a few of the Drs in the hospital I am so impressed with how quickly and efficiently everyone else has worked.
The Ciprofloxacin made a major difference within a couple of days - yey!, but unfortunately my knees and right ankle swelled up with avengence and my left wrist decided to join in the fun! I think it must have been a rebound reaction from coming off the Diclofenac. I couldn't move my legs without severe pain. My partner had to lift me out of bed when I needed to go to the toilet. Unfortunately one day he popped out to the shops and then his allotment. I couldn't get myself to the toilet in time - queue more pain and embarrassment for me, but I eventually got myself up and to the bathroom. I cleaned myself up and then ran a bath and stayed in there for aboot 3 hours until my partner came home lol! Now was time for my bowel prep
what an evil thing that is! The senna wasn't so bad but what evil pig came up with Citramag!! That stuff is lethal! Firstly it tastes disgusting, I thought I was gonna puke it all back up! and then comes the after effects of it! Hope I never have to go through that again but I have a sneeky suspicion that we may meet again a few years down the line! Unfortunately for me I wasn't quick enough getting up and into the toilet for the first bowel movement! This is how my part fistula became a full fistula, as I'm sure you can imagine I was in agonising pain and was screaming and crying for a long time. I cleaned myself up and made a bed for myself in the bathroom. I spent the rest of the night not getting much sleep and in the morning when it came to take the second sachet I really didn't want to so I just took half of it. After an hour nothing was happening so I thought 'man up and take the other half Siobhan, you're only causing yourself more problems if this doesn't work' so I took the other half and well lets just say things started moving along haha! The colonoscopy caused me quite a bit of pain so they upped the painkillers. I thought I was awake for most of it but afterwards I realised I had forgotten chunks of the evening - I HATE forgetting things so tried for ages to piece things together lol! So on the 1st of April I had my colonoscopy and the initial results showed Crohn's - if only someone would come out and say 'haha! only joking April Fools!!!' but that's wishful thinking :wink: The gastroenterologist took 8 biopsies and lots of pictures. That night I had a disturbed sleep and was woken up the next day after aboot 7 hours sleep but I felt really awake and alive - this was very odd to me because even before all this I've always been tired even after having an 8 hour sleep. For the first part of the day I just sat in bed watching TV. Then I needed to go to the loo - uh oh! haha! the night before I had had two bloody bowel movements so I thought I might have another one like that but to my complete shock!! I had a NORMAL bowel movement!!! very weird after 8 weeks of diarrhoea! The next couple of days I felt really tired and had pains in my intestines but continued to have proper bowel movements - I wonder if having the bowel prep reset my bowels?
On the Monday I got a call from the MRI dept saying they had a cancellation that evening and would I like to come in. So that evening I went into the hospital. Walking from the car park to the x-ray dept (aboot a 5 min walk for an able bodied person) I felt really sick and short of breath, it was quite a cold evening also and my hands turned bluey white. All the colour had drained from me and as soon as I got to the x-ray waiting area I just lay down on the seats for a while feeling rough. Eventually we were called to go through to the MRI dept and my partner had to support me walking to there. Once there I got changed into the lovely hospital gowns :wink: and was taken through for the MRI. How weird the MRI is - with all the noises it makes it made me think of a choir , like a glee choir lol going do do do do do, be be be be, die die die die die etc all at the same time. after aboot 30 - 40 mins in the MRI I came out and got changed. A porter took me down to the pick up area and my partner brought the car round. By this point I felt so much better, I haven't a clue why I felt so rough.
The next day I went for my follow up with the gastroenterologist. He said that he was 99% sure I had Crohn's colitis and said he wanted to start me on stronger meds straight away. He prescribed me Prednisolone 5mg tabs 8d for 1 week, then 6d for 1 week then reducing by 1 tab a week. Calcichew D3 Forte tabs 2d, Azathioprine 50mg tabs 1d and he's prescribed me more Ciprofloxacin 500mg tabs 1bd as they seem to really be helping my fistula and my eating - I can eat with very very little pain now - I'm a bit like a monster haha!! I'm like give me food!!! all your food!!! I don't care if I can't eat much of it I still want it!! haha! I guess my stomach has shrunk a lot so it's definately a case of my eyes are bigger than my belly! My gastroenterologist is also gonna start me on Infliximab in 4 weeks - I'm really nervous aboot this and also a little upset and confused cos before all this happened my plans for this year were to get pregnant - I had already prepared myself for having a harder time getting pregnant because I was diagnosed with PCOS last August but I never thought I'd have this to deal with as well.
The Prednisolone really seems to be helping me with my arthritis and the Ciprofloxacin are definately helping with my stomach and fistula pain. After reading other people's posts on there experiences I feel very lucky to have got off so lightly. I really hope that I will not have severe problems with Crohn's and can get back to normal life as soon as possible. I am quite confused at the moment and according to my partner very temperamental - 'no I'm not!' I shout back hehe!! Some days I think as soon as this treatment has kicked in everything will be back to normal and I'll never get sick again and then other days I start thinking all doom and gloom aboot it. I'm trying to keep positive but I think it's gonna take me a long while to come to terms with it all.
My partner has been looking into alternative therapies for me and has found a few treatments with different mushrooms, one of which is Kefir which he is going to start growing for me. I have previously taken Kefir for IBS and it did definitely help with my symptoms but I wasn't too fond of the taste so after aboot a month I stopped taking it. I'm sure I can flavour the milk to make it better though. Have any of you guys tried any mushroom therapies? Or any other alternative therapies? and were they helpful?
Right I have finally come to the end of my story, Thank you for letting me tell it, and well done to anyone who managed to read till the end! As I said at the beginning I do ramble and as you can see I wasn't lying lol!
Siobhan xx
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