Hi all
I haven't posted on here for ages as I've been feeling pretty good. I was diagnosed with uc last Aug & currently take asacol & laxatives which has proved to work but I have been getting bad tummy and back pain for a week now. Been to see gp who has referred me for an ultrasound as she thinks possible ovarian cyst. She didn't think it was a flare as I'm not bleeding or haven't noticed any mucus. Can you flare without these symptoms? Noticed last night that I'm peeing brown urine & this am but it's now clear?! Feel very tired and unwell which is unlike me. Any advice would be welcomed as it has freaked me out a bit! Thanks
Hello mummajo
So sorry to hear what your going through! I have UC and bleed every day.. The saloflak foam hurts I prefer mezaline!! Also very constipated!!
I honestly think you could be very dehydrated... Why don't you try drinking lots and lots - and I mean lots of water for Afew weeks and monitor how you get on? Also I get very bad back pain!my aunt has the same thing they gave her cocodonol to help ease the pain xx
Hi....have you also thought of kidney infection ....maybe have ur urine checked for blood, protein, leukocytes etc.......I would DEFINETLY up fluid intake in case dehydration....keep us posted. Hope it settles MJ
Hi Jo,just thinking about you the other day,you've been very quiet! I sometimes have dark,orange urine and was told it can be the reddish she'll of the Asacol we take? What dosage of Asacol are you on? Also what laxatives? Did the laxatives stop your abdo cramps? I am currently taking four + Buscopan daily to help stop cramps ,consultant thinks IBS causing them. I sometimes get upper back pains,especially when eating evening meal but been a lot better after increasing the amount of water I drink. Definitely up your water intake as this should keep you well hydrated,important for this disease. Lower severe back pain indicates kidney problems so I would definitely get blood test done in case! Let us know how you get on xxx
Hi MJ,been thinking of you too! When is your op scheduled for? Hope you are ok xxxx
Hi Jill....was waiting word from hospital and rang them after they had over run when they were supposed to contact me. Reading between the lines think somebody had forgotten to forward letter to stoma nurse to make contact with me. So that's few days ago so hopefully soon ! Uc bit bothersome at mo but no bleeding. I have never had the urine thing but I drink a lotta lotta tea and water lol so that's prob why !
I do no from experience with other people and uti s u can be quite unwell with them . All in all uc is a nightmare at times. Read recent article ...recent research on suterella a bowel bacteria and low IGA....worth looking up. Thought it relatively credible explanation ! X
Thanks MJ will have a read! Got GI appt April,lots of questions as usual! Going to ask for ultrasound and blood tests for H.Pylori,ulcers and celiac....fed up with almost daily abdo pains. Experimenting with Buscopan daily as preventative at the mo,also a laxative every second night,will post any results. Very very confused because I've been told I shouldn't have such frequent pain as I'm in remission?? Beginning to think the onset of UC caused IBS to go wild!!! Such a confusing disease,you will be well rid of it!!! Keep in touch and take care xxxxxx
Yeah my tummy pain has increased but just think it's uc flare. Funny when I had results back the disease was mod to severe at mo when I would have thought it was not as bad so just goes to show u. Someone on some forum compared uc to a constant war within ur body so imagine how much the body has to put up with. Not bit wonder we get so many aches and pains. The tiredness has really got to me last several weeks too..if I energy back I used to hav I would b happy ! Xx
Hi ladies
Thanks for your replies.
Just been to have my bloods taken so should find out tomorrow am what's happening with my body! Hi Jill! I've not been on here for ages as I've been feeling great but just been struck down with something the last ten days and this black urine freaked me out. I'm on 6 asacol a day & 2 lots of laxatives a day too (laxido) I've been getting pretty severe lh sided tummy pain and bad back & then this awful looking black wee made me think that I need some bloods done. It wasn't dark orange, it was like I'd put a can of coke down the loo! Ibd nurses believe it's renal but not a flare as I'm not bleeding but I keep getting mixed answers from people on what a flare is.....some consultants have told me that u can flare without the sight of blood and mucus but others tell me not?!
Sorry you're still suffering Jill. Why don't u try taking more laxatives or upping your meds? I had a build up of 7 days worth of poop apparently hence the reason why I was in so much discomfort but didn't even realise I was constipated!! I HATE this disease, it's too confusing, I never feel like I'm ever gonna be able to get my head around what's going on in there or how to control it! Sending u all lots of love xxxx
Hi Jo,will carry on for a while with the Buscopan and see how I go! Got GI in April so will get some advice. I agree this horrible disease changes all the time,what works one week doesn't the next....grrrrrrr. Did you get your blood tests results? Take care and keep in touch xxx
Hi love
It's just so frustrating isn't it as I felt like I was almost living a life without uc for the last couple of months and swore it was due to my dietary changes but then 'bam' it was back and this time with a vengeance :-(
Got my results yesterday ta & they said that I have high levels of inflammation but seems that all other bloods were ok. Our CRP is supposed to be below 5 and mine read 8 which she said was pretty high. Frustrating thing is that they don't know what's causing it so dunno what to do. She said that it's certainly not right. I'm getting an ultrasound sometime soon as doc thinks it maybe an ovarian cyst. Ibd nurse said it can't be a flare as no blood but it feels like one to me, so swollen & constant pain in that area which I get when I flare. I really don't know what to do hun, it's so scary isn't it Jill? Wish I could just look inside to see what's going on in my body but can't help to feel a bit scared as surely this isn't normal? Had a gutsful mate and no doubt so have u! Hard sometimes to remain positive isn't it but I do try never to let my emotions show as there's people so much worse off than us but the realisation sometimes comes along and smacks me in the face that we have to endure this awful disease for the rest of our lives. Ugh, sorry mate, just a bit down atm, need wine me thinks.....& chocolate!! U still making your lengthy lists for your GI apps?! Lol xxxx
Hi Jill...hope all is well with u...quick update ...apt with stoma nurse and consult tues week and my daughter who was symptomatic and had colonoscopy has been diagnosed with Crohns...shes 28. MJ xx
Soo sorry to hear about your daughter MJ. We seem to be hearing more and more people young and old being diagnosed,makes you wonder why??? Good luck with s nurse keep in touch matey xxxxx
Yeah seems to be the way of it. Did I tell u to look up ..suterella and low IGA...new theory...think I did. Possibly all our processed food now,mega amounts of sugar and the amount of stress that is in everyone's lives. The greater majority of us are all rushing from A to B to C nowadays always on missions of some description ! I think our bodies do not enjoy the amount of stress and demands that modern day society puts upon us. It starts from nursery school ....look at the amount of ACHIEVEMENT forms that are filled in from that stage of our lives. I having read and heard some of the stuff feel that all these expectations from that early an age in life could not be good. And then there is still probably possibility of an infection ! Infections spread more nowadays with the amount of contact we have with people and travel etc. Anyway my theories for today lol. I will now climb down from my soap box ! Take u r back from away now. At least it is getting warmer now and thankfully clocks change this week end. I just love the longer evenings . MJxx
Hi MJ,yes got back last night! Rain today...back to reality...but missed grandkids badly! Sutrrella theory v interesting,will read again! Agree totally re processed/ sugary foods and stress,poor parents frightened to keep kids off school for a day because of fines and attendance targets...makes me wild!! Yep love it when clocks go forward!!! Keep in touch matey xx
Hey Jo,sorry for the delay in my reply but we were travelling home from Spain and dodgy Internet connections! I am confused as to what constitutes a flare,is it always blood,pain,urgency etc or can you flare without bleeding??? Another question for my list methinks! Sorry to hear you are feeling rough again,it's so frustrating isn't it? Just when you think you've sussed it all the symptoms come back grrrrrrrr! I am sure when they've got to the bottom(excuse the pun) of your inflammation they will adjust your meds and you will feel human again. In the meantime enjoy your wine and choc,I also eat mostly what I fancy, I refuse to let this disease spoil my life completely.! Keep us posted Jo as I feel strongly that we all need to support each other and share things that help sometimes,take care and chin up mate xxxxx
Hi Jill....got my blood results bac today and they r low so I need to get them up pre surgery . There's always something !!! Hav to start spatone and I believe beetroot juice supposed to b good and lots red meat....I normally eat very little of it,Prob why I'm anaemic. I can't do iron tabs ...annoys my colitis . MJ x
Hi MJ,yes always something but at least you can enjoy a nice steak or two! Read somewhere that peeps with UC shouldn't take iron tablets because of increased constipation,so back to the chocolate and spinach!!! How long are you likely to be in hospital for after your op? Got my GI in April and list of questions is growing!!! Take care xxxxxx
And liver mushroom and onions lol. I met up with the ileostomy association person this am. She is fab. Has had stoma 44 years is 68 works full time and put one to shame with amount work she does ! If that's how I am after the op will b bonus ! She said bout 7 days if it's keyhole depending on how it all goes .. Hopefully well ...am sure they r growing. ?s always seem endless as symptoms change . Xx. MJ