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Crohn's Disease Forum » Support Forum » Vent Away » The snowball effect...


06-23-2012, 09:07 AM   #1
kira
 
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Location: Adelaide, South Australia, Australia
The snowball effect...

well where to start... I'm 29 and for 2 years i have been dealing with more medical problems than my 81 year old grandmother i'm scared, frustrated, angry, upset, and tired of being sick

i've been hospitalized for an allergic reaction to Imuran/Azathiapren, cant have methotrexate as i break out in a drug fever rash /super-sensitivity (i had previously tried this drug when i was combating S.A.P.H.O symptoms. I have tried humira to only part success switched over to the remicade every 8 weeks - was going well till i had a major flare up /part bowel obstruction in hospital last august and spent 17 days being decorative in a room. since then we have upped the remicade to every 6 weeks and get part allergic reaction to it so have to take at a slow rate (40mls per hour) with a dose of Hydrocortizone and antihistamine before the infusion starts. I'm fust running out of options pred is my go to quick fix for flare ups bu suffer bad with the insomnia side effect and average about 4hrs a night.

as you can guess not much sleep and a poor immune system and i pick up every other floating infection under the sun. i was hospitalized in my first year while i was on humira for phenomena released after 4 days spent 1 day back at work- in hindsight i shouldn't of bothered. The next day flew to melbourne in a mini 4 day trip to meet tim burton. while i was there i developed pluracy so another 2 weeks in hospital and missed out in flying back to melbourne and seeing hey hey its saturday in it return show

I have what i call the snowball effect - I have a small cold then get another infection then another or a return of the previous till at the end i have a major flare up and hospatalised - this happened to me last July - i had a major allergic reaction to flagil/clindamicin and my entire body was covered in a red raised rash - doctors were telling me it was the worse they had ever seen. i was finaly hospitalized last august for 17 days when i was there my GI asked me to drink that horrible stuff to clean your bowls for another colooscpy/endoscopy. well turns out i had pa part bowel obstruction and nothing was coming out so 3am i after being in major pain all night i had my stomach pumped. thankgod for morphine.

since april i have started another snowball - I woke up one morning and bam my eye is red and sore - as i wear contacts i first thought great i have conjunctivitis - buy the end of the day i was scurrying away from light like a vampire so got my dad to drop me off at emergency - they made a specialist appointment first thing the next morning and congrats to me i have iritis...
this went on for a few days then i got a week break and then had another flare of the iritis. I informed my GI who became concerned immediately.

about a week later i developed a bartholan cyst i listened to doctors did the baths it partly opened but my track record tends to lead to extreme so tried to see my usual GP - But he had gone on holidays - i could of slapped him for doing it without notifying me so saw another doctor who must of given me the most expensive gyno in the whole city $195 up front for initial consult and only get $75 back from medicare... i got an appointment pretty quickly and surgery was scheduled for 4 days time.

cyst removed i had a bad time in recovery throwing up whatever i ate for a day after from the anesthetic and pain meds. i was right for a day or 2 and then i developed a bad cold and then the stomach cramps and blood in stool began. so 50mg of pred and jumped straight on the fortisip drinks

boss didnt make it any easier and sent me an email regarding all my "unscheduled leave" and if i didnt improve immediately in a time frame he was happy with he stated that "it will be advisable that you seek other employment that fits with your available time (i.e. part time, or casual)" - in otherwords he wants to fire me cause i'm sick all the time in australia you cant be fired for having a disability so my boss also attacks me for my professionalism - "In addition, there needs to be improvement in the way in which you speak to myself and other staff, listen and take instructions, arrive at work on time, complete your duties within time, and spend time conducting personal matters during business hours. All of these have been mentioned to you previously." -they were never were mentioned and the art director was also cc'd in and he came up and apologized for my boss's behavior and swore that he would defend my professionalism in court if it came down to it. and all this time my boss hasn't being paying me on time - some times 3 weeks late and i get paid weekly!

so now i'm in a major flare up from all this stress - cant handle solid foods (thank god for fortisip) and even that now is causing me aggravation and pain. so now a bowel resection is on the cards since my last dose of remicade was on the 7th of june - our hopes of the drug kicking in have diminished and likely to go to hospital tomorrow as pain has been at an 8/10 for 2 days - lucky i had some codeine forte left over and it dulls it down to a manageable ache


but all i want to do is be able to attend my friends 21st next saturday
06-24-2012, 10:42 PM   #2
sammies
 
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I am sorry you are experiencing all of this and am sending healing, positive vibes.

A few issues come to mind in regard to your job. Might you be able to enlist a patient advocate or lawyer type or medical type family friend to take a look at this letter from your boss and to contact human resources dept or your boss on your behalf? I'm not sure what country you are I but his behavior sounds like there could be some legal issues. Does your company have a medical leave you can take advantage of?

On the other hand, you do sound very ill and you are struggling with a LOT. Is there a chance you can take a leave of absence or actually leave working for a few weeks? Certainly you know your life situation the best but it sounds like you need some family or friend or even patient advocate type support to put all these things together to start on path to wellness.

Take it slow. Keep us updated.
06-25-2012, 07:22 AM   #3
kira
 
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hi thanks sammies - i called our "Fair work" line the very next morning and they put me in touch with legal aid and saw a lawyer the very next day and they helped me write a letter in response which i sent off that day - it was pretty kick ass

still waiting for my boss to give a formal reply but now ended up in hospital cause even my fortisip drinks are giving me pain and might have possible bowl obstruction since i havent gone since friday and thats very unusual for me - the idea of surgery is being thrown around more in conversation now so we shat see how my ct scan goes tomorrow

also thank you for reading and replying to my post
06-26-2012, 05:23 PM   #4
kira
 
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my current GI is away so been looked after by a set of gastroenterologists in hospital my GI gave them his mobile and to contact him if have any questions in regards to my case.

firstly they speak to me about what i'm taking tried to tell me it sounded like my flare was calming down as i had not had a bowel movement since friday and i hadnt been in pain. I explained the reason i wasnt in pain is because i hadnt eaten anything and that not going to the toilet twice a day is very very unusual. as in a major flare i go 6-8 times or every time i need to do a wee. then they asked if i had given 6mp a go i explained i was on a 6 weekly dose of infliximamb and that i had a major allergic reaction to Azathioprine (hospitalized for a week with high fevers and vomiting) so GI didnt think it was worth trying yet as my body has already been under so much stress we didnt think i would win out on the 50/50 chance with my track record. so now they are going to do some blood tests or something to see if i'm compatible with the 6mp... not that it will help me now as i'm already in a major flare

the xray showed a lot of inflammation in the smaller part of my bowel just like my last flare in august...they have all the results forwarded to them however as i have only been on clear fluids since being admitted i haven't been in pain just slight discomfort at meal times. so the docs didn't believe me when i said i couldn't tolerate food and that i was receiving pain over my fortisip drinks. so they got the bright idea to see if i could tolerate a low residue diet at lunch as i hadnt eaten since friday and despite the xray results my hesitation and going against my previous history they got me to eat a chicken and mayo sandwhich at lunch and some dry biscuts and boy did the pain set in.

the looks on their faces told me it all "omg what have we done why didnt we believe her"... it was like they weren't listening to me as i have only had this disease for 2 years and i didnt know anything - they wanted their proof and they dam well got it by putting me through my level 10 pain threshold where i couldnt deal and had to have 75micro grams of Fentanyl to get the pain to subside.

all i can say is thank god my mother was here and then my dad for support and the docs were there to witness what they had done to me. felt like slapping them in one of their faces when they said 'well at least we know now and have the proof' cause my testimonial and the xray wasnt enough.

they are meeting today to discuss my case.. would love to hear what goes on in that room when it happens... and been changed to a mri scan tomorrow

saw a surgon last night he thinks my bowel is just constricted from the flare and wants to avoid cutting it out - but i'm becoming more convinced it might be better to cut the diseased part out - so tired of the cycle

cant wait till my doc is back next week... will try to transfer into his capable hands if these idiots dont get their shit together and start listening to their patient for once.
06-26-2012, 10:12 PM   #5
Jennifer
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That's just awful that they did that to you. They shouldn't have had you eat like that.

Back when I had my resection there weren't a lot of medication options and they tried everything under the sun but the inflammation was just out of control and was obstructing every now and then. Instead of sticking to meds for longer they decided a resection was best and not only took out the part that was scar tissue but took out the diseased portion around it to give me the best chance possible at remission. It worked perfectly for me and 13 years later I'm still classified as being in remission (clinical remission, I have some minor inflammation off and on). When I was reading your first post even before you mentioned a resection I was actually going to suggest it in case you haven't seriously considered it. Since you have, waiting for your real GI to get back may be best since you feel they are more competent (unless you have a full blown obstruction then that's an emergency situation and you can't wait). A resection may very well give you a fresh start rather than go from major flare to major flare over and over. Its not just affecting your job but your well being in general. Keep us posted on what happens. And sorry for the late response.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
06-26-2012, 11:50 PM   #6
kira
 
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well what an interesting morning... breakfast turned up - low residue and i turned it away just like i did with dinner the night before -"I'm supposed to be on clear fluids!!" waited an hour still no breakfast. got myself a cup of tea and had some apple juice. a doc came in at 9ish i think he some sort of intern or junior doc he was going to present my case to his "consultant" he wanted to clarify some details of my case - clearly he didnt read it or obtained the information as he got some major key points wrong, so set him straight and he said he would be back at 10 with the consultant. well 10 came and went and i waited over an hour - finally decided to go for a walk cause i got sick of the complaining from the woman in the bed next to me took my mobile with me and got a call the consultant finally shows up at 11:35. finally it seems that i am getting through to them and were all on the same page... they want to see the results of the MRI - tomorrow and then decide how big the inflammation is and if i will have surgery - and i could try free fluids. then to add to my frustration lunch turns up... its low residue.... so went to the nurse desk and put the tray on the counter and requested again clear or free fluids...

i dont know maybe its the lack of sleep, from the lady next to me keeping me and 2 other little old ladies awake all night (and the night before) with her complaining and her impatience over the nurses. and then she sleeps all day... but just dont have the patience today and getting very upset and frustrated very quickly...

i'm hoping it will be surgery, i'm tired of these snowball effects and this thing taking my quality of life and missing out on birthday parties for friends and going out and being normal - i was put in the bottom netball team cause of my "health issues" damn disease had to prove them right...

thankyou to those who have responded and read - i'm the first in my family to have this - none of us had heard of it before - seem to meet a lot of people that have been able to manage their symptoms through diet and tablets. your words and this forum have given me faith, knowledge and hope. and assured me i'm not being over dramatic with my symptoms and yes it is that bad...lol
06-27-2012, 12:05 AM   #7
Jennifer
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You're hardly being over dramatic. You're more than welcome to do so on here though. :P

I like that you got up and dropped off the food at the nurses desk. That's awesome. Hopefully someone gets your order right even it broth (oh what do I want today, vegetable, beef or chicken... they're all crap!), tea (the only thing with a decent selection but makes you pee all the time), juice (can't open the lid, now its all over me) and jello (if I eat orange jello again I think I'll go postal) gets so old you want to throw it across the room, or at the lady who wont shut up. There's definitely something to be said about having your own room. I hated sharing rooms cause there's always someone who complains and whines. I bet they'd pass out if they went through what we all go through.

Setting the interns straight can be a lot of fun. I almost hit one once after my surgery cause she came in one morning and took off my bandage and started poking at my incision WITHOUT GLOVES and it hurt but she wouldn't stop doing it. She finally pulled away when I lifted my hand. I think I would have hit her but could have easily blamed the meds I guess. :P To this day I still wonder if she was the cause of my infection. She didn't even change the bandage or tape it back on right so it was all floppy.

Hope you get out of there soon. We're all here if you need us.
06-28-2012, 07:16 PM   #8
kira
 
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well had my mri scan yesterday at 2pm and never felt so sick drinking 1.5 lts of drink in an hour... i really wish they would put the docs through the tests when they aren't feeling 100% so they know what we go through. after spending 45 mins in the tube struggling to hold my breath i was returned to my ward

my doctors came up around 5-6pm as my mum and dad were here. they had had a quick look over the initial scans.. the flare is in the exact same spot as last time and stretches about 30cm through my smaller bowel. They are thinking that the best step forward is surgery due to my sever intolerance to azathiopine and methotrexate. So see the surgeon today after he has had a look at the MRI results.

another good thing they said was that the spot where i was having the issues is the best spot for surgery.... so finally something working in my favor. also they said that they might be able to do the surgery and i will probably be able to eat in few days after... so looking forward to sinking my teeth into a piece of white bread, butter and honey... been on a liquid diet for far to long now getting constant headaches..

just a bit scared now as have no idea what to expect with the surgery - how long recovery is - when i can return to work and netball... halfway through the season and I'm the star GS... I have put my team into a comfortable 4th before i was hospitalized it would be good to make it back for finals in 8 weeks as i know they can keep winning and maintain position.
06-29-2012, 01:29 AM   #9
kira
 
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scheduled for surgery next Wednesday morning! - they are even going to let me go home before the surgery which is awesome or I would be climbing the walls... not that i already am!!!

so back on wednesday for another week stint they are going to try and they seem very confident that it should only be a laparascopic ileocecectomy - so heaps happy - biggest fear was open surgery and the months of recovery after rather than weeks ... but should all be good - they took me off the hydrocortisone yesterday and only had 25mg of pred today. Had massive chills/sweats last night and temp feels like its all over the place today unless i keep on top with the panadol.

feeling much better about everything now and looking forward to being able to eat again!!! i miss eating food - so sick of jelly and soups... oh well 1 more week and then i should be rright as rain .. fingers crossed everything goes well

best bit is I will get to attend my friends 21st!! yay!!
07-01-2012, 07:35 PM   #10
David
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Best of luck with the surgery! Please keep us updated
07-01-2012, 10:44 PM   #11
Jennifer
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That's great Kira! Keep us posted when you get a chance.
08-06-2012, 04:09 AM   #12
kira
 
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well its been an very up and down month since i last posted ... but unfortunately the snowball only got bigger and now i feel like alice tumbling down the rabbit hole

i'll pick up where i last left off... they let me out of hospital friday the 29/06/2012 as long as i was a good girl and degraded my pred dose as per scheduled and remained on liquid foods i wouldnt have to return till wednesday the 04/07/2012.

i did get to attend my friends birthday but i also had to endure the increasing ferocity and lengthening of chills/and fever. it started the night i cane out hitting me at about 2.30am sat morning and lasting for a half hour - both the terrible chills which would rock my body and the high fever would would send me searching for water as if i hadnt drunk anything in 3 days. each night the length of each would get worse it was 5 hrs in total on saturday and then on sunday it seemed to of never ended - i also made the mistake of trying to eat blended minestrone soup which put me in a bit of pain that night after the chills had raveged my body for a relativly short time (1hr) i hit high 39.9 and felt so parched like i had been left out in the desert to die. i did have water but i dare not drink gushing mouthfuls as i knew it would only make me sip so forced myself to take tiny sips... i then had to go to the toilet but on the way back i began stumbling and felt very unsteady on my feet i leant aginst the wall and made it back to bed and collapsed determined not to move till i had help i cried out for my mother like a sick 9yr old child but she didnt hear my cries - it dawned on me that my parents door must be closed and she couldnt hear me over the sound of my fathers sleep apnia machine... so i grabbed my mobile and rand the home line knowing there was a phone in their room... "mum i need help" was all i said as i lay exhausted on my bed. it worked they both got up i then had to convince my mother that my dry cracked lips and my very high temp couldn't wait till morning and i had to go to hospital now (2:30am) she rand some health services as we had been seeing all over the news there were bed shortages in the hospital due to cold/flu season. the nurse suggested we call a ambulance. it seemed a bit excessive as i wasnt in pain so i crawled onto the back seat of her car and she drove me - we were in luck not a single person in emergency - i was put straight through - i did enjoy the confused look of my doctor as they wheeled me from emergency to a ward as we passed him going past the stairs obviously on his way up to start work.

from that stage the surgery date was put at threat they took blood cultures like vampires and we both prayed that my temp would stay down and be down... things improved as i received more fluids and as the day of the surgery presented the fever disappeared and i was scooted off.

now i was very lucky they removed about 30cm of very infected small bowl and about 1-2cm if my large and stck it back together all through keyhole. waking up they had me on the morphine button unfortunately for me i was in quite a bit of pain so it took about an hour of pressing the button every 5 mins (this was my lockout time) till i was finally comfortable but morphine makes me drowsy and so does the residual effects of the anesthetic so i would fall asleep only to be woken by pain and have to start the whole process again ... now for some reason instead of calling my mother they called my father and so i had to manage without someone pressing the button for me till she arrived thankfully she was there soon and would wake me to let me know i could press the button - the next day i was feeling quite good all bar a little pain and so the docs looking at how much i had used which wasn't a lot put me on 10mgs of endone and i was off my drips and allowed to eat. i seemed to do really well for the next day or so the fever came back for a day and disappeared and the sunday (08/07/2012) i was allowed to go home.

within 36 hrs i was back in hospital - this time reaching my level 10 pain threshold i always knew i had a ten and thus constantly have said eight with my stricture and slight bowel obstructions. but this time i had never know a pain more worse - i was vomiting constantly which would hut my newly formed scar and tender insides and then my insides would sear in pain and i would vomit again. i did not know if i was vomiting because something was wrong or i was vomiting because of the pain.

so another early morning trip to the hospital at 3am on Tuesday morning (10/07/2012) my blessed mother thought it would be faster to drive me and she was panicking as i was in so much pain... i wanted her to call the ambo knowing they would give me pain relife instantly but my breathless request wasn't heard and as i was in so much pain i could not fight her - the nausea - and the pain at once i could only managed 2 as soon as we arrived the emergency room was full this was 3-3:30am tuesday morning and apparently a 7hr wait my mother checked me in a nurse assessed me and a bed was brought out as i could not sit in a chair as all i could do was curl into a ball and rock out the waves of pain it was like contractions it would be painful all the time like my level 8 and then it would peak. in the back of my head i had put the pieces together - it had to be a bowel obstruction. they refused to give me morphine in the waiting area they could only give me oral painkillers - which i would obviously throw up seconds after swallowing anyway so they gave me an injection for nausea they might as well filled it with saline for all the good it would do. i continued to fill my bucket with vile acidand bile and the pure smell would make me vomit all over again. to me it felt like i had been there hours and yet in reality my mother would tell me it had only been 45 mins one of the nurses took pitty after my mother sternly advised that i be seen or given something for the pain
they came out with 5mg of morphine and as soon as it hit i was bought down to a level 6 pain threshold which was finally manageable

they took bloods and xrays - for some reason my tummy was still full with fluid - i thought it was quite impossible because i had managed to throw up at least 2 liters so down went the nasal tube and another 500mls was expressed was topped up with morphine 10mgs a a time i would call as soon as i felt the slightest slip. they pumped me full of anti nausea meds rotating between them. now i was loosing too much fluid and none of it was being replaced so as obviously i couldnt consume liquid i had to have an iv - now i have had a hell of a lot of needles and i'm pretty tolerant but this bitch nurse freakin HURT when she put the needle in to an very easy vein the fluid made the feeling of crawling out of bed and dragging my caucus across the room to hang my head under a tap lessen...

then my blood test came back my potassium level was dangerously low so they hooked me up and poured it into my iv within seconds my upper arm was searing in pain - i thought because of the butcher nurse and the area was still sore it was a result of this earlier treatment so another gel-co in the other hand and re hooked up and as soon as it started within seconds i thought my hand was being attacked from inside by thousands of wasps stinging me - my veins were collapsing with the potassium being put straight in so the docs had no choice but to hook me up with a slower option.
the surgons saw me with frowns on their faces and orded one of those barium xrays. a warning sirenen rang throughout my brain - i had to hold onto fluid in my gastro system for several hours so they could get this xray. they pumped the liquid through my nose tube as i refused to try and drink it. and put a stopper on it had to hold onto the liquid for 4-6 hrs - i mentaly quietened the warning bells with the knowledge that my docs know what they are doing and know whats best .... very stupid - slowly i started to feel sicker and sicker between the contant mophine and fentinal top ups the anti nausea was being put in just as frequently but i knew i was loosing a battle finally at 4:30pm after bein injected with the horrible stuff at 9:30am that morning the guy arrived to pick me up and take me to xray i tried to get one more antinausea dose but it i had to wait a 30 more mins so with sick bac in hand i was driven down to xray where the guy who was to pick me up was told off he was sent over an hour ago to collect me ... i had to wait there were 3 people ahead of me now slowly i knew i was as at the edge of holding on to this liquid i asked the nurses how long and all i go t was a very soon i had been waiting for 20 mins already then minutes later my little inner voice tha was always encouraging me to hold on went silent and i remember telling the nurses "?you need to express this out of me i cant hold on anymore" seconds later i lost my grip and i violently vomited the barium and bile into the sick bag i vomited again as the nurses rushed to draw the curtins to give me privacy. i wanted to kill my doctors then all for the sake of their god damn xray.

after 2 days of constant expressing and pain meds i had a second bout of surgery they made my scar slightly longer and they found my discomfort. part of my bowl had fallen through and twisted on itself in a 360. - apparently it happens but not that soon after the first bout. this time i had a better anesthetist and he pummped me full of fentanyl and gave me a fentanyl button unfortunately the button wasnt set up as well so the first day i struggled to get up and down and would have to press the button a couple of times just to get up. but after that was fixed i seemed to be doing well eventaually i got to go home on wednesday the 18th

i was doing really well till sunday the 29th where i have now taken another turn - the fevers are back the chills as well but without the shakes and the nausea and some vomiting so spent a day in bed on monday dealing with fevers and sweats and saw the docs in my schedualed follow up appointment - my body deciding to step up the nausea and have a fever intime for the appointment. due to bed overflow they couldnt get me a bed that day so 8am the next morning i had to wait for till 12pm in the discharge lounge till my bed finally became available and they through me on a very strong antibiotic.

the docs ordered a ct scan and again they asked me to drink vile tasting die stuff - i had learnt my lesson from last time i was throwing up stomach bile the night before and despite the anti-nausea meds i was still feeling a bit off i took a very small sip and instantly my stomach rebeled and i dry reached. i informed the nurse i could not drink it she must of rung my doc and i repeated the same thing to him i was not going to make myself sick for the sake of a "clearer" ct scan

so the ct showed a collection at the area of the join - the side of the sugery when my tummy is pressed has been sore as well so after several days and no major improvements they now think its my crohns flaring again so 50mgs of pred started today with continued antibiotics - the site is also twinging when i walk or twist and turn in bed

will this ever end?
08-06-2012, 09:53 AM   #13
David
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Wow, you poor thing. That's terrible I don't know what to say

*hugs*

If there's anything we can do for you, please let us know!
08-06-2012, 06:28 PM   #14
kira
 
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thanks David just posting and having people read and post helps a little

one good thing is that i have been able to watch most of the olympics - i enjoy watching sport - although getting very angry with the Australian media saying that the people are expecting gold from each of of hopeful gold medal events and then the athletes under performing because of the pressure when really we are behind them just hoping for gold like they are but happy with the best performance they can produce

seems the pred is working straight away haven't had the twinging - still had a temp yesterday arvo and sweated through 3 t-shirts last night - my best record yet
08-06-2012, 08:12 PM   #15
David
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I'm glad the pred is helping Night sweats sure do stink though
08-07-2012, 12:06 AM   #16
tots
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Kira-

Iritis sucks! It was what led to Dx oh so long ago!!

Well that and the diarrhea- weight loss and pain that was all in my "head"!!

Good luck and get better very soon,

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
08-11-2012, 08:52 PM   #17
kira
 
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well friday and the docs took me off the pred cold turkey - they were also so happy with my blood work that they sent me home. second glance looks went around my family they weren't even going to wait to see if the symptoms came back.

so sat night guess what happens i start to feel pain in my abdomen going all the way across it feels like the crohns pain ... yes so soon after the surgery but i have always proven to be the unusal and "special" circumstance

so back to hospital today cause the pain has me doubled over but this time under my gastro doc
08-11-2012, 09:23 PM   #18
stefan
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Damn that sucks kira, sounds like you really can't catch a break

Hopefully some hydrocort in hospital will calm things down quickly for you, but still raises the question of why, as well as the long term strategy.

All the best, and hope you get things sorted out soon!
08-12-2012, 09:34 AM   #19
David
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I'm sorry Kira. How much prednisone were you on and how long had you been on it for?
08-13-2012, 07:13 AM   #20
kira
 
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hi david i was on 50mg of pred for 4 days

my body reacts so well to pred its always been a go to drug for a quick fix for crohns

i'm feeling a lot more confident being under my own specialist - got into hospital at 12:30pm sunday arvo after talking to my specialist around 9:30am sunday morning. he had organized bloods and a ct scan straight away and even came in at 2pm to see me and discuss what was happening. had the ct scan at 4pm and my specialist called me at 7pm to discuss the results

its a lot of little abscesses near the site where they reconnected the bowl and lots of inflimation around the site and a thickening of the bowel wall... all crohns related symptoms other than the abscesses which is the infection obviously... they are dumbfounded as to see a crohns flare so soon after surgery however i keep reminding them this is me they are talking about and usually if theres a small chance and very rare version of something happening my body decides to go down that path...

plan a is 100mgs of hydracort 4 times a day and iv antibiotics 3 times a day
been written up for oxy and feyntalil for pain relief - fortunately i havent had to had more than 10mg of oxy - i hate the celexiphane injections and i cause of the hydracort for some reason they need to monitor my blood sugar level?!! have had blood tests again today... so many god damn pricks and needles especially after 5 weeks

one good thing is no pain today - tummy still feels solid and sore to press in areas, specialist is very glad i am in hospital after seeing ct scan so would love to have a look at it myself - i can feel what goes on but it would be good to see for myself

cleared things up with the boss but its getting to the point of asking myself - is it worth coming to an agreement with the boss and go on sickness benefits and just spend a couple of months getting better. if that happens i would love to go back to tafe and study more in my field and get the qualifications and skills i seem to be lacking even though i have been told by industry pros that my current work in code is some of the cleanest and the best ... lots to think about my mum and dad brought up the idea of taking a few months off so they are supportive of me living without contributing much to the household which is a great stress relief

lots to think about not sure how long this stay is going to be

so far its been like this
25/06 - 29/06 - hospitalized QEH for a crohns flare 30cm stricture making it hard to eat - sent home since could care for self with pred and diet till surgery (04/07)
2/07 - 08/07 -returned earlier to QEH because of high fevers, and cold shivers/chills surgery still went ahead on the 04/07 bounced back really well fevers returned a few days later eventually released on the sunday
10/07 - 18/07 - readmitted to QEH with bowel obstruction - turned out to be twisted bowl in 2nd op performed on the 12/07 took longer to recover
01/08 - 10/08 - readmitted to QEH after follow up appointment high fevers again with vomiting and feeling unwell an nausea sent me home the day they stopped pred
12/08 - n/a eta yet to be advised - admitted to flinders private under my own specialist sick of the yoyo at qeh - sever pain - one fever on sat but managed with panadol, night sweats/sweats were coming back

and thus my whole torrid life - no boyfriend or social life - haven't been able to play netball either to release my frustration the girls still might be able to make finals and I'm hoping i will be able to play the important games there's a final game of the season before finals in two weeks and 4th will be decided but this weekend will help if my team wins then we will have a good positive run for the final fight who wins that last game will decide 4th. i hope now more than anything i will be well enough to play i have played and sometimes lead my team successfully in the last 2 seasons from finishing 4th to getting to the grand final and even winning on one occasion so i stand at one loss and one win.

i so want my normal life back - work and netball relatively simple but unobtainable at this point hard to be positive but i so much want to play with my team we have bonded really well and it would be amazing to be finishing a season off playing with them rather than sitting on the sidelines - an that statement goes for my life in general
08-13-2012, 03:15 PM   #21
David
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Join Date: Feb 2006
Location: Naples, Florida
Wow, you poor thing I'm glad you're happy with your new specialist though. And I'm glad they found what was going on. I hope the new treatment does the thing for you!
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