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Just a bit of advice :)

i was told i had crohns disease after being admitted to hospital with dihydration in sept 2012, i am currently on aza, calcium tablets, paracetamol, buscapan. my crohns seems to b ok atm but i have to see a specialist about my kidneys because my consultant says theres something going on but shes not too sure what.. im confused about this?! Over the past 2 weeks i have been constantly tired im sleeping about 10 hrs a night and still fallin asleep during the day, having headaches that i cant seem to get rid of and my body is always aching i was wondering if anybody can give me some advice or is someone going through the same thing? crohns is all new to me so i feel lost atm.. thanks xx
 
Hey,

I was diagnosed with crohns in August last year and I am on Budesonide and Calcium Tablets - horrid things!

I've not had anything mentioned to me about my Kidneys but I have similar symptoms to what you have had - tiredness/aching and have no idea what it is.

Any advise would be helpful to me as well :( x
 
hey,
kidneys have only been mentioned because they thought i had kidney stones but x-ray and scans have come back fine... the tiredness and aching tho is really getting me down atm as all i seem to do is sleep and its not good when i have 2 kids to look after and go out to work... i hope u get some advise hun xx
 
Thank you! Luckily I don't have any children to look after, just myself but I'm young and have no energy to do anything with my friends after I've been at work all day.

It's so demotivating and I am having bad mood swings because of it :( xx
 
I have had to cut my hours at work because of crohns, my kids are very good about it all and try to help me, bless them!! i have bad mood swings too my poor fella has to cope with a lot lol xx
 

Astra

Moderator
Hiya Nicola
and welcome

Things will settle down, eventually, once the Aza has kicked in. This drug made me tired too. But...Crohn's does make you fatigued too, with additional extra intestinal manifestations such as joint pain.
Immune system works in overdrive, trying to fight active inflammation = hitting the deck!
Have you had your blood work done recently? Check for deficiencies in Vitamin B12 and Iron. Up your potassium levels with bananas.
Make sure your drink up to 2 litres of water every day, dehydration can cause headache.
Lots to take in, but have a read thro our sections, there is a subforum on Aza/Imuran too.
good luck xxx
 
hi joan,

thanks :) i was on iron tablets and for some reason my gp hasnt given me them this time round, i have my bloods done every 2 weeks atm so due to go back friday for more. Is it worth ringing my crohns nurse as im not due to see my consultant until 3 months time and everytime i go to see my gp they dont know what to do :/ which i find daft!! im currently on antibiotics due to abscesses i just feel like im always ill atm its getting me down :( i will try with the bananas tho to see if that helps, im drinking as much as i can atm but everything just goes right through me... sorry if i seem to go on alot i just dont know how to deal with all this xx
 

Astra

Moderator
Hiya Nicola

with the best will in the world GP's aren't much use when it comes to a specialist area!
I would ring the IBD nurse, yeah, but to be fair, I'm not sure what they can do neither. How about phoning the gastro dept and asking for an appt earlier?
Where do you go for bloods done? When blood work is done it's usually the standard FBC, fullblood count, white and red cells etc, so you need to ask for more done, ie electrolytes, enzymes, calcium, ferritin (iron) glucose, but more importantly, a CRP, C-Reactive Protein blood test, this will show any inflammation.
What are the antibiotics you're on?
Have you tried the low residue diet? This will help to slow down the bowels and reduce the diarrhea.
good luck xxx
 
Hi Joan,

i am waiting for the crohns nurse to phone me back, i go to trafford general hospital to get my bloods done as thats the hospital im under. Im on flucloxaillin for the abscess, when i finally speak to the nurse i will mention about more blood tests. tbh i dont no what to eat and what not to eat as at the moment i dont really eat as i am never hungry i tend to eat cornflakes and thats it, when i do cook for the rest of my family i do put food out for me but i have about 2 mouthfuls and thats it.. everything im eating and drinking is going right through me :/ xx


thanks Jim :) xx
 
Hi Nichola
i can empathise with the diarrhea since my op i go 4 times plus a day and during the night, i also work but hoping to reduce my hours, but also could lose my job due to so much time off.
All i can advise is keep going back to your GP or Gastro when you think the drugs arnt working! as only you know that! dont let them fob you off with the cheap drugs...the best ones are Humira, Infliximab but they are expensive around 10 thousand a year to treat a person.
im in a new relationship lol! bowel problems, fatigue and swollen joints yeahhh check me out ha ha im quite a catch! and im only 44!!
keep your chin up
claire x
 
Hi Claire,

i havent had any op yet and itsscary knowin one day i mite need one, im pretty lucky with my work im only bank staff (i pick wen i work) but i have had to reduce my hours alot since sept last year, for me the aza seems to b workin atm its just everythin else that seems to come with crohns thats a problem, ive started to wear sun glasses in the house as lights seem to hurt my eyes and i get horrid headaches, ive also noticed my hips have started to hurt wen ive been walkin for a long time. ive been in my relationship for 9 months now so still newish haha so i know all about bein a catch lol the diarrhea seems to have clamed down alot go me!!! haha. thanks for ur reply :) xx
 
Hi Nicola30,

I'm very sorry to hear you are going through this.

I was diagnosed with Ulcerative Colitis 3 years ago. On the latest colonoscopy they changed it to Crohn's. Folks on another thread have advised me to have my vitamin D and B12 checked. Haven't had a chance to yet, but regardless I plan to get some supplements of those as soon as possible because I haven't found anything saying it could be harmful. It sounds like reasonable advise to me.

I haven't eaten bananas since I was a kid but (and I haven't thought of this until reading this post) I saw some in the store about a year ago and they looked good so I bought some. After eating the first one I decided it was the best thing I've ever tasted. Now I eat at least one per day. I wonder if it was my body telling me it needed extra potassium.
 
Hi Mike2871,

thanks for replyin, im tryin some supplements started today on some complan that has alot of different vitamins in so gonna av one a day at breakfast as i dont eat until tea time anyway as i never feel hungry, im also gonna av a banana a day around lunch time hopefully this mite help me :) i will see. xx
 
Hi Nicola
I have a complan in the morning and at night as like you i dnt eat during the day. i now get them on prescription thank god as they arnt cheap! also if you havnt had your Vit D measured then do it...i had mine done and ended up having to take 50,000 whatever micros over the course of a week and i must say it boosted my energy levels.
claire x
 
Hi Claire,

im hopin that the complan help me and then i can to to my consultant or gp and tell them how ive been and hopefully if its all good to then get them on prescription, im gonna mention the vit D and B12 too, i think i need some sort of boost.. im going to ring my nurse today tolet her know how ive been and what im doing and i will mention these test.. thanks claire im glad someone else is on complan as now im hopefully that it might just help me even if its just a little bit xx
 
Nicola
just had a thought....mention to your GP/nurse about Fortisip and fortijuice. i also get these via prescription they have everything in them juice in the morning and the milky one in the evening.excellent for when you dnt feel like eating, but also good as we as sufferers have problems with malnutrition due to food not being in our system for long enough to absorb all nutrients. they are expensive about £3 per carton i had them every day for months!
claire x
 
hey!!

just an update, complan and banana seem to be workin feelin kinda good :) still havent got hold of my nurse even left messages :/ back on antibiotics for another abscess and in a lot of pain with it... so within 3 weeks ive ad 2 courses of antibiotics for abscesses.. could this b linked with crohns???? xx
 
Could be...but could also be ulcerated Colitis. Im shocked you havnt heard back from your nurse!!! i would phone your Consultants secretary and say you need an urgent appointment!!
Hope this helps. By the way my job have agreed to let me go back to work on a phased return for a month but this will mean i have to go into the classroom!! Wish me luck as i feel this is my last chance to stay in work!!
x
 
Hi Nic, Im just learning aboutwhat Crohns is doing in my body too - apart from all the usual stuff I also get headaches day after day, but they come in clusters. I also get joint pain which also comes and goes in severity. After reading other peoples stories and facts about the disease I have found that both these things as well as some other weirdo stuff going on is all a result of Crohns. Everyone is either a little or a large bit different Nic - but this site is the best place ever for help, support and information. Wishing you all the best for the future :)
 
Hey Claire

im seein my gp in an hour because the abscess has got worse even tho im takin antibiotics :/ im a lil scared as to wot there gonna do... Good luck with work hun :) xx

Hi JennyT

thanks for replyin, i have found thi site to b great the people on here are fab, i dont feel so alone anymore and if i need to talk i know i can come on here :) im still gettin use to crohns learnin new things everyday.. good luck with everything :) xx
 
Hi Nicola,

How are you doing? It's a little alarming to hear you're going to see your GP for an abscess and not hear any updates.

I hope you're doing Ok.

Mike
 
Hi Mike,

Sorry for the late reply ive been ill/busy, i ended up having to go back to the gp as the antibiotics didnt work so they put me on some other which seem to b helpin now (thank god) i had to have more blood tests done to see if im diabetic :/ im waiting for results which should b back this week sometime fingers crossed all is ok. i have also been told by my gp to contact my consultant to get an appointment earlier than may so i can speak to her about these abscesses becaue i seem to getting them alot now. A good note is im feeling better than what i have been just hope it stays that way for a while cos im fed up of felling poorly all the time xx
 
Hi Mike2871,

I got my results from the MRI scan which came back ok just some inflamation where i keep gettin the abscesses, but the consultant reckons i mite have a bowel infection now (which could of been caused by the antibiotics i was on for the abscesses) because i have been so ill over the past few weeks so the next step is for my consultant to ring me monday to see how im gettin on and if im no better then i have to go in for a camera the followin day :/ still feelin pretty crap atm too i just want to stop feelin so poorly all the time... i dont seem to get a break from it all :( xx
 
consultant rang back, ive gotta go in tomoz for a camera and shes gettin one of her surgical team to look at the abscess to see wot they think, possible seton is wot she said... i feel happy thats sumthin is gettin done and scared in case they suggest surgery :/ xx
 
Hi Mike2871,
it has been a while.. well where do i start haha... in and out of hospital with thicking of the terminal ilieum, constipation so ive been put on docusate, senna and lactulose but still struggle to go toilet and side effects to antibiotics that i was given to treat perianal abscesses, im finally on 200mg aza plus 30mg prednisolone which ive been on for nearly 6 weeks but starting to come off them by 5mg a week :) still get alot of pain tho but im learnin to live with it, not had any abscesses for a few weeks now which im glad about :). My consultant is now puttin me on infliximab as im gettin now better but will still b on aza too, ive had all the blood tests just waitin on results and wen they come back clear i will b startin it which will b anytime soon just waitin on a call to say go in for it, im just hopin that helps as im fed up of feelin like crap and bein in pain.. i hope ur ok :) xx
 
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