Crohns / ulcerative colitis sufferers

DanTheMan said:
Well, December onwards has been a funny old time. I was taken to hospital 2 weeks before Christmas as I had a stomach virus called crypto sporidium. That triggered a massive colitis flare which was uncontrollable with massive doses of steroids and other drugs.

Roll forward to January 5th and I'm taken for emergency ileostomy surgery due to the potential rupturing of my bowel.

Here I am 2 weeks later, now with a stoma and pooping into a bag. What a turn of events. I'm doing well recovery wise as it was done keyhole (purely out of luck as the on call surgeon specialises in laporoscopic surgery) but I'm very weak as I lost 18kg before the op.

I'm feeling positive about life with an ileostomy; no more worrying about how near I am to the toilet or fear of getting on long public transport journeys without access to a loo. I can see the positives to bag life!
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Sounds similar to what happened to me expect mine was a big colitis flare. My bowl was on its last legs so had emergency surgery for an ileostomy March last year. Bag life tbh has been no problem really couple of small issues but miles better than what the colitis would do. My biggest issue has been coming of the steroids as I too was on a big dose that did not have any effect this time. I’m now doing a much slower taper as my adrenal system is being a bit of a bugger getting going properly.

Welcome to bag club if I can help in any way just ask I have tried lots of different bags and products and would advise you do the same you can get lots of free samples to find what suits you best.
 
MOOGLEYS said:
Sounds similar to what happened to me expect mine was a big colitis flare. My bowl was on its last legs so had emergency surgery for an ileostomy March last year. Bag life tbh has been no problem really couple of small issues but miles better than what the colitis would do. My biggest issue has been coming of the steroids as I too was on a big dose that did not have any effect this time. I’m now doing a much slower taper as my adrenal system is being a bit of a bugger getting going properly.

Welcome to bag club if I can help in any way just ask I have tried lots of different bags and products and would advise you do the same you can get lots of free samples to find what suits you best.
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Hey moogleys, I was going to message you as I remember you going through a similar thing. I was also on a crazy predisolone dose for 2 weeks prior to surgery; currently on 35mg and tapering 5mg per week.

Are you still tapering due to physical or mental issues? I'm just praying that the rectal stump doesn't flare as I lower the dose and I don't feel like crap. Prior to this, it was about 8 years since I last took predisolone and I remember it taking me about a year to feel 'normal' again. They give me the shakes and my heart rate jumps up on them.

In terms of bag life, they've put me on a dansac bag straight from hospital. It sticks fine but isn't the most pleasing to the eye or easiest to get clean when emptying. I really like the look of the sensura mio 1 piece or the new salts bags, have you tried either?
 
Hello mate I’m currently on 8mg Pred oral and 5mg rectal and doing a very slow taper about 1mg a month or more if needed dropping half a mg at a time. I was coming down 5mg from 60mg but had a bad time when I got down under 10mg so had to go back to 20mg and slowly from there. I have a combination of mental and physical from the Pred. Physical is my adrenal system taking a while to get going and I had adrenal crisis coming off to quick. They also affect my anxiety making it flare up on dose reduction.

Are you using any rectal meds to keep the stump from flaring ? I was put on Pred suppositories a couple of weeks after surgery and they keep everything happy down there as before surgery I had quite bad proctitis and the stump area was very inflamed.

I had the sensura mio straight from hospital but now things have settled I use a salts confidence be bag which is a bit smaller and also comes in black which I prefer I also prefer the way it empties and seals. I get them pre cut from coloplast too so nice and easy. If you go to the salts website you can order free samples to try....

https://www.salts.co.uk/en-gb/order-samples
 
MOOGLEYS said:
Hello mate I’m currently on 8mg Pred oral and 5mg rectal and doing a very slow taper about 1mg a month or more if needed dropping half a mg at a time. I was coming down 5mg from 60mg but had a bad time when I got down under 10mg so had to go back to 20mg and slowly from there. I have a combination of mental and physical from the Pred. Physical is my adrenal system taking a while to get going and I had adrenal crisis coming off to quick. They also affect my anxiety making it flare up on dose reduction.

Are you using any rectal meds to keep the stump from flaring ? I was put on Pred suppositories a couple of weeks after surgery and they keep everything happy down there as before surgery I had quite bad colitis and the stump area was very inflamed.

I had the sensura mio straight from hospital but now things have settled I use a salts confidence be bag which is a bit smaller and also comes in black which I prefer I also prefer the way it empties and seals. I get them pre cut from coloplast too so nice and easy. If you go to the salts website you can order free samples to try....

https://www.salts.co.uk/en-gb/order-samples
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Wow the adrenal crisis sounds terrifying, was it obvious something was up or did it come on gradually? How long were you on pred for prior to your ileostomy? I'll certainly look out for that.

In terms of my rectal stump, it's been fine since surgery. I pass clear mucous every couple of days but it hasn't caused me any issues. I've just been terrified of straining and opening up my stitches ha.

Both the bags you mentioned are the ones I've been looking at. I've asked my stoma nurse to order me samples of both. I'm on soft convex bags at the moment at I've got a very healthy stoma shall we say. It's about 35mm and sticks out a good way. Hopefully it will shrink a bit over the coming months.

Did you have any issues with your stoma healing? Mine started separating round the edges and bled quite a bit. Apparently this is normal. The things they don't tell you eh!
 
chroniclard said:
Just noticed this older post, boy tried modulen to get it all under control. Very hard going as its not the nicest but after a 4 week checkup it had not worked so ended up on steroids.

Such a waste of NHS money too, basically got 2 crates of it left at home as they cant accept it back.
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That's a shame, might be worth mentioning as feedback to your GP - that does cost the NHS a lot of money. When mine had the original request from the dietitian/hospital for 8 weeks of modulen he only requested half of it initially.

It worked very well in the end - I did use a blender (nutribullet) and added some milkshake power. Used couple of scoops of coffee in the morning... It was a bit clumpy if used with a shaker. Had a supply of oxo cubes and similar too as you don't want to purely be on sweet liquid. Also a big tub of glacier mints and boiled sweets, ice lollies etc... basically all different forms of clear-ish "liquid" as far as your bowels are concerned.

Anyway it did the trick, had an operation and things had calmed down enough that they could remove a section and make a join right away without having to have a bag fitted then second operation to do the join.

I think technically I could even have opted to avoid the operation and just live on Modulen for the rest of my life... but that wouldn't be too fun and would cost the NHS a fortune relative to just cutting out the problematic bit.
 
dowie said:
That's a shame, might be worth mentioning as feedback to your GP - that does cost the NHS a lot of money. When mine had the original request from the dietitian/hospital for 8 weeks of modulen he only requested half of it initially.

It worked very well in the end - I did use a blender (nutribullet) and added some milkshake power. Used couple of scoops of coffee in the morning... It was a bit clumpy if used with a shaker. Had a supply of oxo cubes and similar too as you don't want to purely be on sweet liquid. Also a big tub of glacier mints and boiled sweets, ice lollies etc... basically all different forms of clear-ish "liquid" as far as your bowels are concerned.

Anyway it did the trick, had an operation and things had calmed down enough that they could remove a section and make a join right away without having to have a bag fitted then second operation to do the join.

I think technically I could even have opted to avoid the operation and just live on Modulen for the rest of my life... but that wouldn't be too fun and would cost the NHS a fortune relative to just cutting out the problematic bit.
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I think we messed up with the prescriptions, there may have been 2(or 3) separate ones and we got them all at once by mistake. We dont recall anyone telling us not to but you dont think about it.

I tried the modulen, its minging! :p
 
DanTheMan said:
Wow the adrenal crisis sounds terrifying, was it obvious something was up or did it come on gradually? How long were you on pred for prior to your ileostomy? I'll certainly look out for that.

In terms of my rectal stump, it's been fine since surgery. I pass clear mucous every couple of days but it hasn't caused me any issues. I've just been terrified of straining and opening up my stitches ha.

Both the bags you mentioned are the ones I've been looking at. I've asked my stoma nurse to order me samples of both. I'm on soft convex bags at the moment at I've got a very healthy stoma shall we say. It's about 35mm and sticks out a good way. Hopefully it will shrink a bit over the coming months.

Did you have any issues with your stoma healing? Mine started separating round the edges and bled quite a bit. Apparently this is normal. The things they don't tell you eh!
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It pretty much just happened came of the Pred ok with the usual aches and pains but after a couple of days became really ill like I had the flu all of a sudden. I have been on and off Pred for about 10 years but was about 2 months constant before surgery. I had come off them before with no issues but the Dr said the surgery mucks up all your body chemistry and I needed a much slower reduction. It does not happen to everyone so I would not worry about it just worth checking in with your Dr when you get down to 10mg.

yeah mines pretty much the same at the moment. I use the suppositories to keep it all good. I will need the stump removing too but the Dr wants me off all steroids before they will do it unless it becomes another emergency.

My stoma has been fantastic a little gap and a bit of bleeding is normal it will all heal up. Mine is not fully healed and my surgery was in March it takes a long time. Mine is also 35mm and sticks out a bit. I also have a nice 5” scar where they opened me up to remove the colon. My surgery was keyhole but my colon was too inflamed to remove it through the stoma hole and the surgeon thought it could rupture.
 
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Any advice for constipation relief with UC?

I am massively bloated all the time, big wind and gas, blowing the sheets off most nights, surprised the missus is still with me to be quite honest.

Can't seem to pass a complete bowel movement either, never feel empty. Can go two days withou the need to go to the toiler. About three weeks ago I came off a four week flare where I was going to the loo six+ times a day and every time it was diarrhea.

Fun and games. Both ends of the spectrum are cruel.
 
wingman said:
Any advice for constipation relief with UC?

I am massively bloated all the time, big wind and gas, blowing the sheets off most nights, surprised the missus is still with me to be quite honest.

Can't seem to pass a complete bowel movement either, never feel empty. Can go two days withou the need to go to the toiler. About three weeks ago I came off a four week flare where I was going to the loo six+ times a day and every time it was diarrhea.

Fun and games. Both ends of the spectrum are cruel.
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Have you tried Movicol ? When I had constipation and bloating with U/C it worked wonders. Might be worth asking your GI Dr see if they think it’s worth trying.
 
MOOGLEYS said:
It pretty much just happened came of the Pred ok with the usual aches and pains but after a couple of days became really ill like I had the flu all of a sudden. I have been on and off Pred for about 10 years but was about 2 months constant before surgery. I had come off them before with no issues but the Dr said the surgery mucks up all your body chemistry and I needed a much slower reduction. It does not happen to everyone so I would not worry about it just worth checking in with your Dr when you get down to 10mg.

yeah mines pretty much the same at the moment. I use the suppositories to keep it all good. I will need the stump removing too but the Dr wants me off all steroids before they will do it unless it becomes another emergency.

My stoma has been fantastic a little gap and a bit of bleeding is normal it will all heal up. Mine is not fully healed and my surgery was in March it takes a long time. Mine is also 35mm and sticks out a bit. I also have a nice 5” scar where they opened me up to remove the colon. My surgery was keyhole but my colon was too inflamed to remove it through the stoma hole and the surgeon thought it could rupture.
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I'm certainly going to keep an eye when I start getting to the lower doses of pred! It feels like learning to be a human again after the surgery, I've forgotten what is normal for my body and what I should worry about.

Rectal stump wise, I imagine I'll have it for a few years in case I opt for j pouch surgery but I seriously doubt that at the moment. I'm not sure how far down my inflammation went, I hope the bit left stays calm.

How often do you change bags? I've moved to every 2 days as I have a wound right in the barrier line and don't want to irritate it every day. I've heard people say they do it every 3-4 days but that seems quite a stretch with a 1 piece?
 
DanTheMan said:
I'm certainly going to keep an eye when I start getting to the lower doses of pred! It feels like learning to be a human again after the surgery, I've forgotten what is normal for my body and what I should worry about.

Rectal stump wise, I imagine I'll have it for a few years in case I opt for j pouch surgery but I seriously doubt that at the moment. I'm not sure how far down my inflammation went, I hope the bit left stays calm.

How often do you change bags? I've moved to every 2 days as I have a wound right in the barrier line and don't want to irritate it every day. I've heard people say they do it every 3-4 days but that seems quite a stretch with a 1 piece?
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It’s worth keeping it mindful but don’t worry too much as everyone is different and you may well not be affected. My Endocrinologist said that dropping 5mg a week was basically like throwing dynamite onto a fire and hoping it goes out..... lol.

Hydration is important with an ileostomy. Keeping your salts and electrolytes balanced can be fun especially at first. I use loperamide to keep the output thicker and drink ORS drinks like Diarolyte and I put electrolyte tablets in water bottles.

In U/C the inflammation works it’s way up from the rectum. You start with Proctitis and it progresses from there. I have been told that J pouch surgery would not be recommended for me as I have had a fistula and how bad my U/C was. Tbh I’m happy to keep the bag I quite like it....

I do my bag daily. I remove it using remover spray and clean up the sticky stuff with remover wipes, shower and then apply a new bag I also use barrier cream wipes. After my surgery for the first few weeks I did it every other day as I had to do dressings too.
 
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Ive been referred to hospital by my doctor to start the ball rolling with look for UC and Crones because I've been putting up with severe bloatedness and wind but no diarrhea or blood or anything.

I have to wait until the end of march for the appointment and I didn't think much of it I've just been dealing with it when it flairs up but I had no idea about some of the stuff I have just read that you guys have been putting with, I'm really worried now!
 
wazza300 said:
Moogleys,was yours an end iliostomy?

Did they ever put you on infliximab before the surgery?

Have to say crohns is the worst thing ever
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I think so I had my large intestine removed apart from the stump which will be going later along with the rectum.

Yes I had a bad reaction to it during the infusion and they had to stop. I was pretty much destined for surgery after this Tbh I wish I had the surgery years ago. I have a friend who is on infliximab and it has pretty much prevented him from needing surgery and put his U/C pretty much into remission so it does work well for some.

Yeah it’s a bitch as well as all the physical symptoms bowl disease gives it can also play havoc with your mental health especially with all the drugs we end up using.
 
MOOGLEYS said:
It’s worth keeping it mindful but don’t worry too much as everyone is different and you may well not be affected. My Endocrinologist said that dropping 5mg a week was basically like throwing dynamite onto a fire and hoping it goes out..... lol.

Hydration is important with an ileostomy. Keeping your salts and electrolytes balanced can be fun especially at first. I use loperamide to keep the output thicker and drink ORS drinks like Diarolyte and I put electrolyte tablets in water bottles.

In U/C the inflammation works it’s way up from the rectum. You start with Proctitis and it progresses from there. I have been told that J pouch surgery would not be recommended for me as I have had a fistula and how bad my U/C was. Tbh I’m happy to keep the bag I quite like it....

I do my bag daily. I remove it using remover spray and clean up the sticky stuff with remover wipes, shower and then apply a new bag I also use barrier cream wipes. After my surgery for the first few weeks I did it every other day as I had to do dressings too.
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Thanks for all the tips moogleys, it's nice to be able to share the experience with someone who has gone through it.

Need to speak to the stoma nurse today to get some bag samples ordered and see how they all fit.
 
DanTheMan said:
Thanks for all the tips moogleys, it's nice to be able to share the experience with someone who has gone through it.

Need to speak to the stoma nurse today to get some bag samples ordered and see how they all fit.
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No worries mate happy to help if I can I’m still pretty new to it myself but have found talking with others in similar situations really helpful.

If you use the link above you can order them yourself and other items like remover sprays, wipes etc. Your bag supplier can also give you samples if you ask them. I have had samples of pretty much everything going...lol
 
Hope everyone is ok.

I ate a chinese for the first time a week last monday (i have an intolerance to MSG so avoid normally but taking a Taurine supp helps), A few hours afterwards and my stomach started the gurgle.. Thought it was probably just overeating. Each day got slightly worse until thurs night. Full on flare mode. I was up pretty much all night with "Flare up Diarrhea" So that was me not eating for 2 days and then only toast.

Fast forward a few days and things were starting to settle down so ate a proper meal. Boom that night was the worst "Flare Diarrhea" I've every had. The cramps and the "projectile pooing" was the worst I've ever had.

20 mins on the loo and I'd come off it absolutely worn out. Every muscle had been trying to expel whatever was in my guts as fast and as hard as it could.

Loads of Mucous and very Yellow stools, But no Blood. Was I having a flare up or was it just something I ate.

I felt fine, Knackered, But fine. I was sleeping in our guest room with an ensuite. I'm literally 8 feet away from the bowl and failed to make it on 2 occasions.

Spoke to my IBD nurse and asked if there was a bug going round as although this had 90% of the feeling of a flare it didn't quite hit the mark.

So in 2 weeks I'd had 3 nights where I managed to sleep through. As I wasn't really eating I then had nothing to "expel" things calmed down again.

And then back to "Normal"


I've lost a stone. (goes to show I was full of **** like the wife says) And now I'm having a bowel clear out day. No urgency just LOTS of Mr whippy being passed.

Now that was a scare. My last Flare lasted 12 months as they really didn't want to give me Pred, And I'm really not in the position to be going to the toilet 30x a day right now long term
 
Well this week has been 'interesting'...

Had a bit of an IBS flare after a run on Tuesday evening, in which I evacuated pretty heavily and loosely in 3 movements in one sitting. A little blood, but I don't read too much into it as I suffer periodically from hemorrhoids which tend to bleed during cleaning when I'm more frequently on the throne. I find it a bit odd that I sometimes get a IBS attack after exercise, not sure if it's due to muscle tension in my back squeezing my bowel in all the wrong places?

Anyway, cut to Wednesday evening. I'm out in the pub with a couple of friends for a meal and a couple of beers. I have Fish & Chips and a couple of pints of ale, and then suddenly without warning I get these goddawful pains in my abdomen, mainly at the bottom left (if I look down at my navel) of my belly; these are WAY worse than IBS cramps, persistent, and I'm showing no inclination to want to evacuate to ease the pressure.

I taxi home, and after a dreadful night full of pain, I get an emergency appointment at the GP. She examines me, and thinks it might be kidney stones, but refers me up to the hospital via A&E for checks, as I'm in such pain. Next thing I know, I'm going for a CT scan and being admitted to the Colo-rectal Surgery ward(!) I'm put on IV antibiotics and pain killers and not allowed to eat until at least Thurs morning. I was an in-patient until today (Sunday) (!); my temperature kept spiking and the pain wasn't abating so they kept me in...

The diagnosis? An 'uncomplicated' diverticulitis flare. Sheesh. I've never known pain like it. I have a follow-up appointment on Tuesday, and a longer-term one for a full colonoscopy. Joy.
 
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