Laid up!

[jakelayla]

Hello everyone, progress at last. Well I knew I had colitis, and was determined to fight it by healing my mind. I was fading away and had great advice from you all. Anyway on Wednesday morning collapsed and ended up in hospital on a drip for two days. Strangely this has been the best thing thing that could have happened, I honestly thought I was dying, and feel so much better now. Now I have some questions. I have had histology reports which state I have collagenous colitis, which is a form of microscopic colitis, but there is a bit of head scratching about this as my colonoscopy showed inflammation which doesn't normally show with this type of colitis. They are of course bowing to histology, I am so relieved to finally know exactly whats wrong with me, and the hospital were brilliant! i have been on bedesinide for three days and feel so much better, my appetite has gone through the roof and nausea has gone. Does any one else have collagenous colitis? Would love to hear from you. Hope you all have a good Sunday.

[AF59]

Hi jakelayla, I too have histology reports which state collagenous/microscopic colitis but my gastroenterologist is scratching his head and using words like "curiously" in his letters to my Gp as he also found other signs that would normally have indicated crohns. I am on 2400mg mesalazine x 2 daily and prednisolone (reducing) I have other problems that can be adversely affected by some drugs prescribed for IBD so that's where I'm staying for the moment. My initial days with this wretched condition were horrific; now however I am, if not cured, definitely more stable and no longer on the permanent loo dash treadmill. Keeping food diaries to identify trigger foodstuffs and cutting out those things (however addictive!) that really set things up for flares made a really big difference. Was a rather long winded process (oops, no pun intended) and I am still introducing things back into my diet gently to expand my choices but I do now have a list of no no foods. Still lust after a handful of nice crunchy nuts or a salad with raw vegetables and yummy tomato but....

I'm so glad you have a diagnosis and are getting treatment to alleviate your symptoms. The only way is forward now. And yes,it's Sunday - just going to take a gentle walk before having my afternoon cup of tea (with lactose free milk!).

[jakelayla in reply to AF59]

Hello AF59, good to hear from you. Our stories are similar that's for sure. I do fit the bill so to speak for collagenous colitis as I am female and 57. I know what you mean about diet, I loved steak and raw vegetables, but tremble at the thought of eating them now. I was extremely dehydrated when in hospital and was on a drip for two days. The flare ups with this condition are horrific, I can't believe the amount of water I lost from all the loo trips. My biggest concern now is staying hydrated. I feel relieved to finally know whats wrong with me. Thank you so much for your reply. Hope you are feeling well today. Good luck.

[AF59 in reply to jakelayla]

Hi jakelayla, Sorry, only just found notification of your reply via my email spam box (spam definitely a no no food!!) so its a bit late but I found keeping a glass of dioralyte on the go when flaring helped with the dehydration. It also helps to replace the magnesium and potassium lost in all those loo trips. When I was admitted to hospital I was so dehydrated my arms and legs were just bones and flappy bits, ugh! Used to be quite proud of my legs in my mini skirt days too! Could almost see my limbs filling out as the drip bags emptied so I do understand the concerns over staying hydrated. I have become quite the poser, looking dead cool and hip with my bottle of (definitely non carbonated) water in my hand wherever I am! Do you have a specialist IBD nurse that you can contact as soon as you start to flare? I have an amazing one who is so very knowledgeable and helpful and gave me good tips on what not to eat. We also have a patient driven group that meets up to exchange views and also gets presentations from pharmacists, dieticians and other experts in the IBD field. Worth asking around to see if this is available in your area. Sleep well. K

[Shoeysmum in reply to AF59]

Hi AF59

I have left sided UC so could be totally different to your version. I drink about a litre of carbonated water each day so I'm curious as to why you say you only drink non-carbonated water. I have to say it doesn't appear to affect me adversely.

[AF59 in reply to Shoeysmum]

Hi Shoeysmum, carbonated water is a trigger for my AF, another one of these conditions where what works for me doesn't work for someone else and vice versa, so I avoid fizzy drinks. Bit of a misery really, sometimes that which is beneficial for AF is bad for IBD, like the laxative effects of Mg when it goes into you via the gut, but hey ho, on with the juggling! My main aim in life is to try and avoid too many "dual" times when I have an AF episode during an IBD flare. I have found HU invaluable for tips and suggestions for both conditions and through trial and error am slowly developing my own coping strategies. From what I have read during my research into IBD there does seem to be a wide variation of symptoms, types and treatments for it. I hope you are fully diagnosed as it were, and have a working course of treatment that suits your particular UC. Stay well.

[Shoeysmum in reply to AF59]

Thanks for your reply AF59.

Yes, my UC is fully diagnosed thanks. I was diagnosed in February 2017 and put on Asacol tablets (3 x 800 g daily) and Asacol foam enema when in a flare.

I had my second flare in Sept/Oct last year, so almost went 2 years without one, and it just went on and on and on. I was advised, via this forum, to speak to my IBD nurse, which I did, and she advised me to go on Pred. Whilst the Pred killed my flare up immediately, and I mean immediately - same day in fact, I had a whole host of nasty side effects. After a routine follow up with my consultant the Asacol enema was changed to Pentasa enema. Hopefully that will avoid the need for me to have to take steroids again. Only time will tell

[AF59 in reply to Shoeysmum]

Must say I really appreciated the effect that prednisolone had on my IBD since life felt pretty grim at the time. I think I would beg to take it again if I got back into that horrendous state in a flare up. However, the side effects (which can be very different for different people) are another story, and I would love to be free of them. I am on a reducing regimen now, which is producing another set of side effects, but I also need steroids to treat another decease I have so when I'll finally stop taking them I have no idea. But I guess that's life, I'm just grateful my innards are so much calmer at the moment, long may that continue to be the case. I have heard of many people with various versions of IBD who have stayed in remission for years once the meds were sorted. Hopefully that will be the case for you with the change in your meds.

[jakelayla in reply to AF59]

Hi AF59, I was also just bones and flappy bits when admitted, which is disconcerting when I have always been fit and healthy. I rely on dioralyte too. I am taking one imodium daily with the budesinide, and went to loo only once yesterday which is normal, but is it normal for this condition? Maybe I will stop the imodium and see whether the budesinide is working on it's own. This is a learning curve for me. Yes I have a nurse I can contact anytime, which brings peace of mind. Tonight I am cooking roast pork, have always loved crackling...but dare I, we will see! Sending best wishes to you.

[AF59 in reply to jakelayla]

Oh go on jakelayla, try just a little bit. You will never know if it should go on your banned list otherwise, will you? And you could deny yourself one of life's (few) pleasures when you don't need to. It hasn't appeared on any thing I have seen as a bowel irritant, I think we just shouldn't indulge too much 'cos of the emphasis on low fat, low sugar, high fibre, etc etc etc diets that we should all follow, healthy or not. Speak to your IBD nurse if you are concerned about the number of trips to the loo, but I think if it feels normal for you it's probably OK. If it becomes more frequent than your norm, then definitely make the phone call. Enjoy that roast! K

[jakelayla in reply to AF59]

Thanks for the encouragement AF59. My husband is urging me to throw caution to the wind, and go for it! So I will...ooh how daring!!! Might also have a glass of red wine too, really push the boat out. You have to laugh, this illness has cut me down to size (or is trying to!) Hope you are having good day.

[AF59 in reply to jakelayla]

Now don't go too wild jakelayla, save some excitement and pleasure for another day! Cutting down and size are emotive words for me - steroids have definitely been a wonderful taming med for my IBD, the relief I finally got was amazing but so was the growth spurt in all the wrong places amazingly swift and most unwelcome. Would have said I wasn't eating much due to all the discomfort and loo dashing, but obviously some of what I ate (probably quite a lot if the tape measure is right) stayed with me! Portion control, portion control, and a bit of research to see how others coped with this unwelcome side effect of Prednisolone is called for. My Gp says some of it should disappear when I am no longer taking the steroids as my desire to eat everything in sight will diminish. Here's hoping. My day was good - thankyou, enjoy your evening. K

[jakelayla in reply to AF59]

Good to hear you are fine at the moment AF59. The steroids I am on have got me back to feeling normal again, well normalish I should say, so am feeling very grateful for that! After losing weight so rapidly, which I found terrifying, I don't mind putting on some pounds. Take care, and thank you everyone for all the support I have received.

[SORRELHIPPO in reply to AF59]

When I was on Steroids, used to call it "fits of the munchies" I could empty the fridge in half an hour, no probs. Live in a flat and the bedroom is next to the kitchen, so would lie awake mentally raiding the fridge, wondered about a lock at one point. I would get my husband to buy me choc I loved, and then get him to hide part of the bar. Now he is gone, this does not work!!! I did get myself a "food safe" also works for cigs, you set the time and lock it. Will not open until time arrives, I gather one person took their electric drill to it, and got in, showed the level of desperation!! Once off the steroids, things slowly get back to normal and I know I only need a few days flare + the weight falls off. It does mean I have 3 sizes of clothes in my wardrobe, and do not throw any out. If I am wearing a size 10, have been very ill, size 18/20 have been munching, 16 and am normal (whatever that means).

[jakelayla in reply to SORRELHIPPO]

I know what you mean about weight yo yoing all the time. I am trying to put weight back on as like you say, a couple of days with flare up and it falls off alarmingly. Hope you have a good weekend.