Colitis is getting me down! - Crohn's and Colit...

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Colitis is getting me down!

32malewithcolitis
32malewithcolitis

Very low mood today.

Wonder when this will all subside!

Had to come back to bed the discomfort is just too much. Lower and upper right.

Mucus had subsided a bit but still hasn’t disappeared

Just seems bizarre and not common of colitis to just have constant one sided discomfort and just a bit of mucus. And to have been going on since February! The discomfort is more like a pulling/ sore sensation which doesn’t seem related to passing or eating. On a couple of occasions I’ve had griping stomach pain directly before passing which was eased straight after, which I remember to be a bit more typical.

I seem to go a few days almost discomfort and mucus free then go back again

Doing another calprotectin monday. Last one a month ago was 108 but the consultants said it’s a positive step as it’s come down from 950 and during the steroids I did one and it was only 4!

Why do I still feel so crappy and have the same symptoms?

I will get answers soon as I have my 3 yearly surveillance scope in a few weeks.

can a calprotectin of 108 suggest Im still mildly ongoing flaring after all this time and answer to the symptoms? My anxiety is through the roof thinking something else is to blame 😫. Been sent for all sorts of blood tests and blood in stool tests - all were fine except liver ALT which was 59. Normal is <40. Second test it had gone back down to 50 and the consultant said it’s very insignificant and nothing to worry about. Had a colonoscopy in 2014&2017. Both fine. One showed microscopic colitis in 2017 and 2014 I had a couple of polyps which were removed but I was told they were benign and not the kind that could even turn malignant. I’m 32 and had pancolitis since the age of 6 but this is only my second flare.

The consultant has said it isn’t impossible that it’s something sinister but that based on all the above it would just be extremely unlikely and doesn’t seem 1% concerned (a positive in my eyes I hope).

I think the worrying is making me worse and I even got sent for cognitive behavioural therapy which did help a bit but I don’t think anything will fully relieve me until the colonoscopy can confirm it is only colitis to blame.

On the grand scheme of things it’s just mild symptoms I guess most of the time and have been doing some reading that says remission Means “no symptoms or mild symptoms”. I’m just uSed to having zero symptoms at all so this is new to me

I pass 1-2 times a day. Normally semi formed broken clumps. I take salofalk 3G granules. Was on octasa highest dose but was passing them fully. Did a short course of beclamethasone in March for 4 weeks

I know we’re all different but is this typical of colitis? What would people in my

Position do? I’m pushing for the colonoscopy and they’ve assured me they’re prioritising it as quickly as possible but that it isn’t a 2 week referral based on my symptoms / tests etc

Thanks for any advice / sharing

Andy

31 Replies
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Hi Andy

Try and stay positive, I have recently been diagnosed with colitis and on high dose of octasa but still having issues

Hope you will get some answers soon

Take care

Thank you for those kind words. It can be a struggle getting it into remission when you’re first diagnosed - hope they manage to get you sorted soon! X

Hi

I have been reading your replies on here, I'm on octasa tablets and sometimes pass them whole, maybe I should ask to change my medication to the granules, only ever had bleeding either constipated or diarreah sometimes pain down left side but since last Friday I haven't stopped going to the loo, every time I eat I get pains and off to the loo I go. Is this a flare up, not had this before, not sure if anxiety bought it on . Feeling better today though hope you are too

Thanks honey! I’m not feeling too bad thanks! Calprotectin has come down to 72, only discomfort I get is like a pressure feeling upper right so hoping that is nothing to worry about. Got a scan on Sunday:

I’d definitely ask to change to the granules if I were you

Hi male with colitis, sorry to read your having such a tough time with colitis. It's also horrible waiting for a colonoscopy as your flare has gone on a long time now. Would get anyone down . I can undrstand how you feel as I've been flaring since March with colitis and am in a lot of pain and like you some days are worse than others. I've had two calprocten tests of 250 which the Consuktant said was high. I'm waiting for a colonoscopy and had thought I'd be in the fast track because of my symptoms but Learn't I'm in at routine so it is taking longer to have it!. I was told begin sept which will be an 8 week wait but I bet it will be longer!. It's easy to be fobbed off on the phone!. How long have you waited?.

I hope you feel better soon and I hope it helps a little to know your not alone. Keep safe 😊

It's getting me down too and I wonder do you get the sharp joint pain as well?. I find that really tough and the fatigue as well!.

I get lots of fatigue. Not so much joint

Pain. My main symptoms are mucus and also upper right abdominal discomfort - possibly liver as my ALT has come back slightly raised so had to have full liver screen and awaiting a scan on that - fun!

Yes I was told September too, that’s my 3 year mark since my last one and it’s also routine but they’ve still said theyre only doing emergencies at the min!

What are your symptoms?

My last calprotectin was 108, I handed another one in today so be interesting to see how it is now

Hi male with colitis., my liver is complaining like yours and my Alt is suddenly raised. I've just started MTX so thought it was the drug but thanks to reading your posts I know it's not!. My Gastro Consuktant said its nothing to worry about so it's good yours is being thoroughly investigated. Hope you get the scan soon. They're going to do the terminal ileum test as well as the colonoscopy!. Have you had that?. How long have you had colitis?.

I'm getting pain in same area as you and it can be severe!. I have urgency and did have diorrhea which has slightly improved. I get mucus very infrequently and not much. The fatigue has got worse so luckily it's all being checked in my bloods. Having that done this week. Will be interesting what your calprocten resukt is this week. Keep us posted. It is a difficult condition to live with X

Ive had it 26 years, usually Well controlled! Only had 2 flare ups, ive never had a terminal ileum test what’s that for.

Sorry you've had colitis so long but fortunate to have had so few flares. No wonder your finding it hard. What treatment have you had as mine is meant to be mild but I've had frequent flares?. I've had it 10 years.

The terminal ileum test is called ti intubation and it's done with the colonoscopy. Not had it before. It's to look at a particular part of the intestine!. It's a junction part where Crohns and colitis can meet. 😊

Ah I assume theyVe checked but will ask at the next scope

I am on salofalk 3g granules at the minute as I was passing octasa whole! I had a short course of beclamethasone steroids in April. What are you on?

It's always a good idea to ask about these things male with colitis!. I don't know what salofalk granules are and why you take them?.

I'm on oral steroids and methotrexate for another condition!. For colitis it's oral steroids and Budesonide 3 mg. the Consuktant said he might change my treatment after this scope!. That's a different steroid preparation I've not heard of but glad it helped you. They are a godsend for this condition aren't they?. Good luck for your calprocten resukt. X

Thank you misty! How is your colitis atm?

Salofalk is a type of mesalazine still, but jsut granules form instead of tablet, it’s just maintenance medication for colitis

I didn't realise colitis treatments coukd come in so many different forms male with colitis. I started on Mesalazine but the tablets. You've done well staying on it for so long.

My colitis at the mo is slightly better but still getting this awful pain , feeling hot and achey!. Do you get nausea with yours?. That's suddenly worsened. How's yours?. 😊

I’m not horrendous, I feel better than I was. This was a very slow flare unfortunately but I’m getting there!

I get nausea quite a lot and a lot of wind and bloating! What sides your pain on? Have you tried cocodamol until it’s back in remission?

I'm glad your improving male with colitis. How long does a flare usually last for you?. This has been my longest ever since March!.

I too get bloating and nausea and the pain is on my right side where they want to look specially. Your pain is there too?. I'm on other pain meds so coukdn't add Cocodamol but have taken it in the past and it's helped.

Have you been like me not really knowing anyone else with colitis?. It's quite unusual and not easy to live with.

Maybe your Consuktant will change your treatment after the colonoscopy?. Have you had the calprocten resukts yet?. Hope it's improved. X

I haven’t had the results yet, expecting them in the next 2 days.

I don’t know anyone really I just post a lot in the UK ulcerative colitis group which has been great.

My discomfort was lower right but is almost non existent now. I get upper right twinges which I’m hoping isn’t my liver as my ALT has been consistently raised for 3 months which is part of the liver function test. However they did a full liver panel test and everything Else was normal so they aren’t concerned

To be honest this is only my second flare in 26 years. I think my last one was a lot worse in terms of symptoms and pain as I was hospitalised, but I was treated quicker

This one seems to have been a low symptom flare but very persistent. So mucus and discomfort that just didn’t budge for months, it’s only just slowing now since February. It’s an odd disease that’s for sure!

Hi misty.

Had the results and it’s 72. So this is the 5th test

February - 914

March - 4 (during treatment)

April - 123

June - 108

August - 72

Seems to be stabilising. I’m taking this as a positive even though over 50 isn’t negative

Hi male with colitis, glad you've got your calprocten results and they've improved. I agree re take it as a positive because the amount has consistently gone down since Feb. Interesting you say 50 is still high so the threshold must be under that to be negative?. You've had to do a lot of these tests, I'm new to them but mine was 250 twice in June/july. My consultant said it was high!.

I'm wondering if the stress of the pandemic hasn't helped as your flare has lasted since feb and mine March which is long for both of us!.My flares usually are quicker to go. My pain is lower right side like yours and varies according to how much I go!. I'm glad yours has settled and hope now that this continues for you. Mine is so strong.

I've just had my blood results and my liver is better like yours so I'm really glad to have found this site. Any news on your colonoscopy?. I've phoned our endoscopy booking dept about mine and am awaiting a call back.

I've found this book to be very helpful don't know if you are interested but you may already know it. 'Essential guide to controlling Inflammatory Bowel disease ' by Professor John Hunter who used to be a gastro in Addenbrookes Cambridge. Might be your hospital?. I like its easy explanations and help.

Hope your better over the bank holiday. Are you able to work?.X

Hi misty

I am working over the weekend yes. I’m a bar manager. Only 32 and feel too old for it now haha , other than the upper right discomfort and bit of mucus I’m generally fine (worrying the pain is my liver) but the results are only mildly raised - probably

Over thinking it. I have my ultrasound sound Sunday though so hopefully that’ll ease my mind ready for me going to Portugal Tuesday!

I haven’t heard about the colonoscopy yet. I’m in sheffield where are you? I’ll have to check the book out.

I’m sorry your pain is still difficult. I’m sure it’ll clear like mine has, it does feel like it’s never ending when it goes on for so long doesn’t it? I only remember a precious flare 12 years ago but was in hospital for 2 weeks. So a lot quicker than this. This one seems to be more low key but stubborn, same as yours!

What’s your medication? I wonder if you need to change your maintenance meds? My salofalk granules seem to be working better than the octasa capsules - I feel like they were moving too quickly through my colon and some tablets didn’t even split open and passed whole, I also wondered if as the inflammation was obviously right sided (where pain was) That the tablets didn’t open in enough time in this area to control it. The granules are already released so I believe they’ve helped me

Suffering with a a cold and breathlessness today - where’s it end?!

What are your plans over the weekend? X

Hi malewithcolitis, it can't be easy being a bar manager with colitis and you must have worried about losing your job completely!. Is it a chain or a smaller place?. Good luck this weekend specially if you've got a cold/breathlessness!. Not good and you want to be better for Portugal!.

It shows my bowel is still inflamed getting this pain and it will settle eventually I know from other times . It worries us doesn't it when things are worse. My liver has recovered so hopefully yours will too. Glad your getting that ultrasound and on a Sunday!.Great to get the lists down!. Glad you've not waited too long for that.

I agree with your thoughts re the treatments. I take Budesonide and steroids and I think I need it changed. I don't think budesonide is getting to where it's needed!. It's a capsule!. Everything leads back to needing this test!. My GP today apologised for not being able to help my pain!. It's so frustrating not getting what we need especially as S.west has had so few cases!. What about Sheffield?.

I've heard from the endoscopy dept and they hope to book me in for colonoscopy in mid sept. They're still doing the backlog of patients. If I don't hear I will ring again and my GP is being very supportive and wants to know how I get on!. That helps!. Hope your GP is supportive too.

I'm in the South west in Devon and have a new Laptop to play with this weekend!.

Keep as well and safe as possible and good luck. X

Enjoy the new laptop, what type have you gone for?

Sheffield has been pretty bad for cases but its calmed a bit now I think.

I really hope scan is clear - been more focused and worried about that since the calprotectin has improved - can’t win! Wonder if this is what the Top right hand side Pressure under my ribs feeling is linked to - googled it and wish I hadn’t done!

I work for a chain - so wasn’t too worried to be honest - everyone always needs a pub haha, the eat out to help out has been insanely busy!

I’m also due my colonoscopy in mid September - my routine 3 yearly one - hate it when it comes around. Want this scan out the way so I can hopefully enjoy Portugal!

How did your scan go malewithcolitis?. Do understand the need for reassurance but they may not tell you then!.

A thought about your upper side pain . In the prof hunter book on IBD I told you about it does say our liver and kidneys can be affected when our bowels are inflamed as these organs are close by!. Maybe that's what's happening to you?. I get regular liver and kidney bloods done because of being on methotrexate and my kidney function test isn't right since my colitis flare. They look at potassium and sodium which if low can make you feel poorly. Mine are so you might want to ask your GP about having kidney function tests!. Does he know about this pain?. I hate the colonoscopy too, it's the prep isn't it but only way for us to be better to maybe get treatment changes ?.

A lot of eateries down here have opted out of the Eat out to help out scheme as been too busy to be safe!. It was needed later on wasn't it not in school hols?. Glad your with a chain so job more secure and hope you coped last night with work.

My new laptop is a Lenovo recommended by my computer guy I deal with as I wouldn't have a clue!. Ha!. My previous one was an Acer and he said they've gone a bit wrong recently so he's preferring these.it was 7 years old!. It's so much faster and lighter/slimline. I'm loving it and getting to grips with it quite easily!. I had to sort out this update to Windows 10. Which one do you have?.

Good luck with Portugal, have a great time but be careful as I saw in yesterday's paper that they've got more cases and coukd be put on our quarantine list!. You may have to cut it short to get back home. X

Oh that’s all I need! I’m only going for 3 days then flying up to Denmark for 4!

I think I’ve had a kidney function test and they were normal along with all but those 2 liver results

My scan is in 2 hours, very nervous. Already talking myself into worse case scenario and getting worked up!

I have an Apple MacBook. I’m a bit of an Apple geek to be honest with you haha. I’ll post after my scan and let you know if anything is said x

They did it. Said can’t see anything malignant. Asked me if i drink a lot which I don’t drink loads.

He said it looked a bit fatty but didn’t say how much exactly, I asked how much and if it was a lot and he said no.

Don’t know what to make of it?

That might be better male with colitis staying in Portugal the least amount of time. Denmark isn't mentioned so must be ok. Trouble is it changes so fast!.

Glad your scan went ok. Sounds like they meant fatty liver. It is a condition you might like to look up. it means your liver is under extra strain and watching what you eat and drink helps it recover.

Aren't there so many different devices. ?. Don't know about MacBooks but know Apple as I've got IPods. What's the difference between a laptop and MacBook?.

Safe journey and take careX

Thanks misty! MacBook is basically just an Apples version of a laptop. It does the same job really:

I do some reading on fatty liver but I’m so worried it’s worse than that. I have discomfort in that area so what if it’s cirrhosis?

Best to wait malewithcolitis until you get the scan results. The guy doing the scan shouldn't really have told you anything!. Just because you have discomfort it doesn't have to be serious but I know we all worry and think it. Enjoy your hols and try not to think about it too much. Keep safe. X

How did you go? Apparently I have mild fatty liver but GP said it’s normal and nothing to concern over

That's good malewithcolitis, one thing less to stress over. Enjoy your hols. X

What about yours, did they say much whilst performing it?

Hi malewithcolitis, I haven't had the liver scan myself but know about fatty liver from my mum!. She did improve hers. Good yours is mild.

Take care in Portugal as cases are rising. They said on the news tonight that they may go back on quarantine list by end of the week!. Hope it works out OK for you. X

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