Struggling to cope

Hi everyone, 

Please can I have some advice? I have UC mainly left sided, with some patches above (like chrones however they say it’s not chrones ), one in ceacum. I’m currently taking azathioprine, balsalaside, prednisolone, predfoam and laxido (1 daily). 

I have a history in the past of getting faecal loading above diseased part, and two years ago I ended up in hospital for a fortnight following struggling for weeks at home with a flare, and trying to clear a blockage which had showed on x-ray. When I ended up in hospital three weeks after x-ray I hadn’t cleared the blockage even though I thought I had. 

I went into a flare about 4 weeks ago after trying to come off azathioprine, so I went straight back on it, and now I don’t seem to be responding to treatment. about 10 days ago, an x-ray showed faecal loading in sigmoid - I took biscodyl for a week, however, I’m still going to the loo up to 15 times a day, passing a mixture of diarrhoea and blood, mixed loose stools and blood, and often can’t tell what I’ve passed due to blood etc. I’m unsure as to whether I’ve cleared the blockage or not, as per my hospital visit 2 years ago. I’ve spoken to an inflammatory bowel disease nurse who’s telling me to persevere with the medication – but if the blockage hasn’t gone, will this stop me from getting better?

When I had my bloods done about 10 days ago, they said they were normal. However; I’ve read that in UC, CRP markers can be absent or only modest response to inflammation. Has anyone else had any experience of this? When I was in hospital two years ago, my bloods were through the roof – and doctors were extremely concerned. I went on IV steroid and fluid drip, iron infusion and my colon was dilating – they were monitoring me closely. The week previous, my bloods had only shown slight changes even though I was feeling really unwell. 

I am normally a fit and active person, eating well and doing lots of exercise. At present I’m mainly confined to the house, my daughter is getting married in 8 weeks and have my other daughters 21st in two weeks. I feel tired and low and with a busy few weeks coming up I’m concerned on my ability to continue to cope as I’m unable to undertake usual duties despite being off work with sickness. I’m worried I am going to put on weight from the steroid, even though I’ve lost a few pounds so far. 

I was wondering if anyone had any experience similar and if they had any suggestions for better ways to cope or potential mitigating solutions. Has anybody else experienced CRP markers being absent/modest response to inflammation when flaring? Also, can anybody advise me on whether I should be taking calcium following a few weeks on steroids? I’m not currently taking any, I’m 50.
Sorry for the long post, I greatly appreciate any replies.

daisy lou do not despair you can win against this ailment...we did. Loved one had this 4 years nothing worked meds eating drink you name it wec tried but nothing worked..so changed course...we looked at it all like it was a great big bug causing it all and sais we have to take on the bug..it was easy to say but what to do...how do you take on a bug that baffles medical science..so look at it in reverse..the bug does not actually cause it the condition of the gut does somehow..it lets in the bug where it once kept it out...Loved one went from happy successful party educated etc to suddenly uc...the wheel fell off completely...thought quick cure see a doctor be better soon..but no...We sat down and tried to work out how the bug got in what are the conditions in the gut system it neede to survive and then said what can we do to reverse this...got on web and looked at everything people did to beat the bug and worked out a direction to go from there...and it worked....It goes like this...reverse the poor condition of the gut system so the bug is under threat...no wheaten, no dairy no sugar,heavy carbs,no glutten,no alchohol,no coffee no beer no acid food no crap food no junk food no sweets and a lot more....the bug likes you to wallow in all of these because it feeds on this muck and this much rebuilds the conditions within which it thrives..look at all you eat and ask yourself is this what the bug likes...modern foods are saturated with chemicals from the time they are grown on a farm until the time we eat them...the gut system can not handle this but the bug loves it...so do everything the bug hates..go on the web and find the foods uc people eat like we did,you pick and choose what suits your gut and what does not ...we did this and it worked....loved one had no success at all until we went down this road...now combine your new good eating program with really good exercise..build this slowly as you go...ignore the accidents..go out into the sun for vitamin D..you will see all of these good tips in the stories of uc people on the web..use some not others whatever works for you...all uc people a bit different...the change is remarkable soon in the body and the bug haTES THIS BECAUSE YOU NOW THREATEN IT..this is good..whatever the bug hates you go and do..I see you have strong family ties loved ones and such this good..go to those functions the bug will hate you going so thumb your nose at the bug and go anyway..who cares an accident or two..work out a plan to cobat this..but when your there don't give into the bug and eat thec food it wants..so what if things don't go to well you and your family benefit greatly and the bug looses because you attended...Get on the web and see what others do...we did this and a wole lot more to put the boot into the bug and it worked...loved went to major clinic and shocked doctor there with test results...no parasites germs or bugs associated with uc in the system..got rid of the swelling the bloat gas and scar tissue by using a product called serrapeptase..its an enzyme which vastly reducesinflamation and scar tissue...got a tip for this and it worked..one med left now but also told not to go cold turkey on that med...keep taking for a few more months then fade it out...also the best tip is to only eat what you cook yourself wherever possible and stick rigidly to your guidelines and it works...very very good eating sense to reverse the gut lots of good tips from the web heaps of sunshine lots of exercise wonderful family support and go after the bug...you win the bug will gradually lose...put the boot into the bug..and it works...

sorry again daisy lou forgot the most important thing...you need a great probiotic like vsl3 to flood your gut system with the right bugs..see the value of family the good wife just scorched me for leaving this important component out...all uc people a little different from each other..on the web you see one can eat something and not the next so in your journey you can pick and choose...but treally the simple is the best...I myself think there are a hundred and more different categories of people with uc it explains why some meds work for some and not the next person and also the eating of food..but you must systematically work on restoring a fragile gut system...that's how we saw it and it worked..you could write a small book on what not to eat and drink so look at it all like ... is what I am about to eat good for my gut and me or is it good for the bug...if you continue to do this..i think the bug goes into retreat because it cant get what it wants to live its own way...when the bug is down and out you will win..not it

HI Daisylou...I am sorry to hear about your struggles. I will say that you DEFINITELY should consider calcium, in whatever form (food or supplements) as osteoporosis is indeed a risk on prednisone, esp. if you have other high risk factors (age, body type, race etc)
Calcium citrate is more absorbable than calcium citrate. I too have been very active in my life and I hear your frustration about not being able to live the life you did....before.....it does suck.

Yes, my CRP levels have always been low, even in the midst of bad flares....this disease is just so darn complicated and really not just "one disease"
Best to you......hoping you can make it to daughter's wedding

Daisy Lou...lastly...you of course would never know that threend a half years ago I read most of the above in a pamphlet hand out that came by and late again in a books but all around no one would listen..every one went the medical way until 6 months ago...now isn't that danady....loved one so so well very sporty again...a good job ...lovely girlfriend warm family love and happiness...and a so so bright future... I got on a uc site from England and watched someone really smart who was fielding questions from uc sufferers...those poor people who wrote in were utterly desperate for help...I read what he said and he was right...try to restore the orderl operation of the gut system use what food drink and supplement that suit you and the body mechanisms will also help totally avoid the garbage food and you never know your loved ones might just get to jump for joy like we did and do...

Hi there,

Im so sorry your struggling, it really can get you down in the dumps and feeling hopeless. I recently had to travel on a plane and public transport for my brothers wedding I was unbelievably nervous! Are you allowed to take Lomotil to get you to the events you mentioned? That's what I took to get me through the wedding and make sure I didn't miss out on my brothers big day. Make sure you chat to your Doctor first though.

Best of luck to you, I hope you get better soon..