Crohns / ulcerative colitis sufferers

I'm almost constantly drink water, i average 2-3 litres a day, believe me constipation is not my problem and frequently it's the opposite that causes all the suffering.
 
After a few years of being relatively well, I got a cold back in October and didn't look after myself well; I kept going to work, going out and not resting enough (to prove to myself I could still carry on, etc). My Crohns flared and I ended up in hospital for surgery in November. I completely regret not looking after myself. :( Now I've got another scar + seton down there to deal with.

Kids, look after yourselves please when you're not well.
 
Merry xmas guys!


I finally had another sigmoid on the 7th. Been flaring for over 12 months meds changed but no real difference. Moderate to severe flare found. Biopsies taken and put back on the pred. Yay 3 days later.... Normal, well normal for me only 6-8 trips to the loo a day and the excessive wind has gone.

I'm hoping this puts me into proper remission so the allopurinol and AZA and asacol can do their stuff. Back at the hospital on the 27th to discuss results and the next course, I assume infusions

Take it easy guys. I know the temptations over the holiday period. I had a bit too much sugar yesterday that has caused a fair bit of wind over night and this morning and I seem to be having a good clearout now..lol
 
I wish the Surgeons were a little more forthcoming with their definition of “Pain” after the op. If they had said it will be the worst pain you have ever experienced each time you go to the toilet I think I might have looked at different options. But I suppose if they said that they would be out of a job......
 
I am now 36 I was diagnosed with colitis when I was 21 after years of trying different things and multiple weekly stays per year in my local hospital being drip fed steroids I had an examination when I was around 30 to be told a section of my colon was thin and I was risking perforation I had no choice but to have my colon removed I was fortunate to have a great surgeon who performed a j-pouch over the course of 3 operations. I had some big problems during my 2nd operation and had some internal bleeding and had to be induced into a coma I woke up 5 days later not knowing what had gone on but continued to be positive throughout . I’ve never looked back since having my ops just wish I had of had the operations sooner.

For the people who have posted who suffer with pouchitis could you explain the symptoms please as I’ve never had any issues with mine .

If anyone needs any help or has any questions feel free to ask and I will try and help if possible .

Merry Xmas
 
Anyone on any of the biological treatments yet? My father is on infliximab and it's knocked his colitis into the long grass. Worked really well in a matter of hours from the infusion. He's now on an eight week cycle.
 
Maccapacca said:
Anyone on any of the biological treatments yet? My father is on infliximab and it's knocked his colitis into the long grass. Worked really well in a matter of hours from the infusion. He's now on an eight week cycle.
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Yup I'm on Humira, I inject at home. It's doing something but I'm still having issues with Crohn's.
 
I'm writing regarding my partner who has had crohn's for 15 years. She has an ileostomy, and flares as soon as she comes off steroids, so badly that she has stayed on steroids near enough for the entire period (bar 3 months).

She has gotten away without many side effects from steroids, but it seems after our second child the side effects from prednisone have hit her for six.

Her current side effects are:

Palpitations
Dizziness (Inability to stay on feet for long)
Faint (feeling like about to pass out)
Massive weight gain (she used to be near TPN, and was having liquid feeding through the nose, now she's 15 stone).
Muscle weakness (we paid to see an endocrinologist, and she was asked to squat and she almost fell over).
Short of breath

She hates the side effects so much and has literally made her house bound. She can't even pick our daughter up from school because she doesn't know if she can stand long enough in the queue without fainting. She said if she had a choice between pain and this, she'd choose the pain.

Anyone else had such bad side effects? She's about to start an extremely slow wean off steroids, but this has been attempted before and the side effects just got so bad towards 5mg they had to put it back up. We have more faith as we are now under a specialist (endocrinologist) as the IBD consultant has been particularly poor in helping.

Also, I see "Clipper" mentioned in previous posts, I mentioned this to my partner and she said she thought it would only help a large bowel?
 
MOOGLEYS said:
I wish the Surgeons were a little more forthcoming with their definition of “Pain” after the op. If they had said it will be the worst pain you have ever experienced each time you go to the toilet I think I might have looked at different options. But I suppose if they said that they would be out of a job......
Click to expand...
Its of no comfort to you just now but i suppose everyone is different and the effects and results vary.
I had my fistula operated on around 12 years ago now, and your right, its sore afterwards for some time but mine certainly did improve and every op since had been nowhere near as bad.
Currently awaiting a date to get the seaton suture replaced after it having been in for a good few years now. I went to see my consultant a couple of months ago after I was in a lot of pain and was concerned my fistula had blocked up or another was forming.

Crohns wise I'm doing pretty well and can't complain, came off azathioprine almost two years ago now. Don't want to tempt fate though!
 
Maccapacca said:
Anyone on any of the biological treatments yet? My father is on infliximab and it's knocked his colitis into the long grass. Worked really well in a matter of hours from the infusion. He's now on an eight week cycle.
Click to expand...

Thats waht they are thinking for me. I'm at the hospital at 3pm today so I will know more then.
 
Maccapacca said:
Anyone on any of the biological treatments yet? My father is on infliximab and it's knocked his colitis into the long grass. Worked really well in a matter of hours from the infusion. He's now on an eight week cycle.
Click to expand...

I was on Infliximab for years and it was working really well in terms of symptom improvement, albeit slowly. At some point funding stopped and I stopped getting it. A year later, the hospital managed to get funding to carry on treating me. By that time, it was too late. I had built resistance to it and the next wave of infliximab didn't work and I got bad reactions. I am now on HUmira which I guess keeps me ticking over.

Sometimes the hospital/NHS do not think long term. All my abcesses could have healed if they'd carried on the Infliximab. Now they gotta fund for £xxxx a month on Humira for me. It really makes me angry but at the same time helpless as nothing I could have realistically done.

By the way guys, last year I started getting involved in medical research in Crohns with some researchers at St. Mark's. Not testing at all, more like treatment plans, patient involvement for future care, etc. I'll remember to post here when they next want patient volunteers. It's a small thing I am willing to do to help plan future care for Crohns sufferers.
 
DB_SamX said:
I was on Infliximab for years and it was working really well in terms of symptom improvement, albeit slowly. At some point funding stopped and I stopped getting it. A year later, the hospital managed to get funding to carry on treating me. By that time, it was too late. I had built resistance to it and the next wave of infliximab didn't work and I got bad reactions. I am now on HUmira which I guess keeps me ticking over.

Sometimes the hospital/NHS do not think long term. All my abcesses could have healed if they'd carried on the Infliximab. Now they gotta fund for £xxxx a month on Humira for me. It really makes me angry but at the same time helpless as nothing I could have realistically done.

By the way guys, last year I started getting involved in medical research in Crohns with some researchers at St. Mark's. Not testing at all, more like treatment plans, patient involvement for future care, etc. I'll remember to post here when they next want patient volunteers. It's a small thing I am willing to do to help plan future care for Crohns sufferers.
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I beg my docs to use me as a guinea pig, and they look at me like I'm daft :(
 
Also happy to be a guinea pig. Just seen doc and been bunged on a dose of Flagyl as he thinks I might have an abscess forming near my surgery site..... Quite literally a right pain in the arse.....
 
BigDools said:
I am now 36 I was diagnosed with colitis when I was 21 after years of trying different things and multiple weekly stays per year in my local hospital being drip fed steroids I had an examination when I was around 30 to be told a section of my colon was thin and I was risking perforation I had no choice but to have my colon removed I was fortunate to have a great surgeon who performed a j-pouch over the course of 3 operations. I had some big problems during my 2nd operation and had some internal bleeding and had to be induced into a coma I woke up 5 days later not knowing what had gone on but continued to be positive throughout . I’ve never looked back since having my ops just wish I had of had the operations sooner.

For the people who have posted who suffer with pouchitis could you explain the symptoms please as I’ve never had any issues with mine .

If anyone needs any help or has any questions feel free to ask and I will try and help if possible .

Merry Xmas[/QUOTE
Click to expand...

I've got a J pouch and suffer from pouchitis, the symptoms start as butt burn, so early on it's hard to diagnose as quite often I'll get a sore ring from various foods and it's also just one of the delights of having a J pouch having random bum issues.
However it doesn't get any better and the burn starts to develop into eye watering pain like a red hot poker has been shoved up when you go to toilet, wiping is excruciating and it's just a case of dabbing and using water. I start going much more often and with urgency and also start feeling a bit lousy, achey and lacking in energy also my output isn't like normal.

I started getting pouchitis about 5 years post op and a course of Metronidazole would alleviate the symptoms however I started getting pouchitis more regular and in the end every time I finished my course of antibiotics it would start flaring up almost immediately. Eventually my surgeon suggested reducing my antibiotics and staying on a prophylaxis dose as a maintenance treatment which turned out to be 100mg of Metronidazole per day. This kept the pouchitis at bay to perhaps once or twice a year. I also tried VSL#3 but didn't get on with it at all despite perceiving with it for quite some time.
Another potential bonus with Ulcerative Colitis is devoloping Primary Sclerosing Cholangitis, which I did and had to have a liver transplant late last year. In the short term my pouch was in pieces however it has eventually settled down, however I have found I have to now take 200mg of Metronidazole per day to maintain things.
 
chipperhead said:
I also tried VSL#3 but didn't get on with it at all despite perceiving with it for quite some time.
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Am interested if anyone else reading has found this stuff helping much re: Crohn's? I tried it once but only rather briefly, I have heard it is one of probably only two probiotics that actually do anything. Stuff like Yakult or danone yogurts that you might buy from Tesco end up with the bacteria getting killed off in your stomach anyway.

(mods hopefully this doesn't count as a medical question as VSL#3 isn't a drug but just a probiotic anyone can buy and that some people use alongside their treatment)
 
Maccapacca said:
Anyone on any of the biological treatments yet? My father is on infliximab and it's knocked his colitis into the long grass. Worked really well in a matter of hours from the infusion. He's now on an eight week cycle.
Click to expand...

Yes I've tried two. I was on Humira for a while, easy to inject but didn't do all that much.

Been on Vedolizumab for a year or so, best I've been but no real remission. Still stuck on steroids, have been for years.

They work for a lot of people, a lot. Mate of mine with Chron's was completely cured by Infliximab.

I take this alongside Aza, Clipper and the other meds I've listed previously.
 
Well back from my appointment. All good it seems. Tests now show the AZA in conjunction with the allopurinol is now therapeutic so its finally doing what it should be. they want to see me again in march if all is ok, sooner if things head south and they'll look at other options then.
 
mattyg said:
Well back from my appointment. All good it seems. Tests now show the AZA in conjunction with the allopurinol is now therapeutic so its finally doing what it should be. they want to see me again in march if all is ok, sooner if things head south and they'll look at other options then.
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Ah cool, did you have a reaction to the AZA when prescribed by itself? I did then was given the low dose AZA and allopurinol combination (the consultant I was under had done a lot of research on the combination) - the local pharmacist freaked out and didn't want to prescribe them both together until he had the consultant contact him to say it was OK
 
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