Crohns / ulcerative colitis sufferers

I had a bit of a flare a month ago turned out it was rectal inflammation however was extremely painful. I'm sure my pain threshold is very low.

I started a course of oral steroids but after three days of blubbing, not sleeping and losing my stuff with everyone I stopped taking them. They are horrid.

The camera guy was more helpful and enthusiastic than my specialist. So I've now got a course of pentasa suppositories that's calmed things down. The nurse was talking about Humira just being licensed for colitis and that in her words is a game changer for many who have reached the end of the drug options.

I am still finding that diet for me plays such a huge influence in my day to day well being. If I eat crap or have a drink I spend the next few days in pain. My menu is chicken and veg morning noon and night :p
 
Reading this thread really does highlight how everyone has a different experience with this disease.

I suppose I'm still early with my disease. Although its been 6yrs but only 3 since diagnosis I've had a couple of flares. This last one has not been a nice one. The Pred is starting to work the gurgling has decreased the wind (And I mean tornado type wind) is finally starting to lesson too. Although my ears almost popped in the bathroom this morning. The Mucous has also started to lesson.

Its only been a few days so I'm hoping the next week will see a massive improvement.

I've been looking into surgery, Not a serious push just looking into options. At the moment I'd hate to be put under expecting a j pouch and wake up with a Stoma. However If this carries on another 12 months I'm sure I'll have a different outlook.

I'm now a member of the Crohns and Colitits Organisation and have a RADAR key. I think its about time this disease gets recognized as a disability.
 
Mines was sudden, no symptoms then severely hit me and had no choice but to have the operation as my bowel was apparently close to perforation. As mines was quite bad, took me a while to recover, almost a year, to get back on my feet
 
I was very fortunate. I went to my GP as soon as symptoms emerged, and he referred me to Dr Digby Cullen, one of the top gastroenterologists in Western Australia. I had to wait two months to see him, during which time I dragged myself through every day on a regime of painkillers and anti-diarrhetics.

Dr Cullen immediately suspected UC, performed a colonoscopy (I received a copy of the photos, which looked like something from the original Alien movie), confirmed the diagnosis, and put me on Salazopyrin.

One year later, I was diagnosed with ankylosing spondylitis; a form of arthritis that shares a genetic link with UC. The medication for my AS irritates my bowel, and the medication for my UC does nothing for my AS, so it's an awkward balancing act. But I've never needed surgery, and I've always been grateful for that.
 
ColdAsIce said:
The choice was well and truly taking out of my hands. I started deteriorating pretty fast. I basically stopped eating due to the pain having anything in my system would bring. A surgeon came to see me in the Hospital, said he could operate on me within a day or two and explained what would happen. So I agreed to a re-section. Taking your first steps after surgery is a whole new level of pain too :D Think I was a week in Hospital before I could leave. It seems drastic but there is no way I would be able to function longterm by remaining on the cocktail of pills and steroids they had me on.
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Thanks for this, really appreciate it. I've already had a big surgery on my abdomen (16cm incision) so I'm not too concerned about that bit. I just hear some people with a J pouch go 4 to 6 times a day and it's very watery. Was wondering about urgency etc.

I take a lot of medication so I completely understand you wanting off it all!
 
ColdAsIce said:
The choice was well and truly taking out of my hands. I started deteriorating pretty fast. I basically stopped eating due to the pain having anything in my system would bring. A surgeon came to see me in the Hospital, said he could operate on me within a day or two and explained what would happen. So I agreed to a re-section. Taking your first steps after surgery is a whole new level of pain too :D Think I was a week in Hospital before I could leave. It seems drastic but there is no way I would be able to function longterm by remaining on the cocktail of pills and steroids they had me on.
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Was this your large intestine or parts of your small intestine? How long was it until you were able to exercise etc.. ? Did you have to wear a pouch?
 
dowie said:
Was this your large intestine or parts of your small intestine? How long was it until you were able to exercise etc.. ? Did you have to wear a pouch?
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I've unfortunately been through surgery twice. I think it was my small bowel that had to go through a re-section. The 2nd time was quite strange. I started limping at work, had a terrible pain down my right side, around the hip area for days. I couldn't shift it. Stupid GP referred me to the nurse to take a look at my leg despite knowing I have a history of Crohns. The nurse thought I had an infection and gave me antibiotics. The pain wouldn't shift. I returned to the GP complaining that the pain remains. This whole time I continued to work full days in pain, barely able to walk lol. GP directed me to orthopedic department at the Hospital. They took x-rays of the leg but couldn't find anything. Thankfully he took a look at my medical history and saw alarm bells with the history of Crohns. Think I got an MRI scan in which they found an abscess and a hole in my bowel. So yeah, another emergency surgery had to be performed because the fear that this abscess could rupture at anytime.

Once again lucky if I had a day to process this information before going into surgery. I just remember begging the Surgeon not to give me a pouch. He had told me I most likely would have to because I had gone through surgery before. Said he would do his best and thankfully when I woke up he made the decision not to go ahead with the pouch after all. I take b12 injections every 3 months, have trouble absorbing vitamins. I'll probably never have another solid poo in my life :D but it is controllable.

Between the 1st and 2nd Surgery I wasn't on any medication. It was thought the Crohns was in remission and looks like I suffered more from complications after the 1st surgery. Currently on Humira injections once a week and touch wood have been ok for a about 5 years now.
 
Thanks for the reply glad it's finally under control for you now! :) I'm on humira injections too albeit once every two weeks, unfortunately it isn't working as well as would be hoped... am hoping to avoid surgery but the consultant mentioned I quite likely will have to have an op at some point - I definitely want to avoid having a pouch if I do have surgery!
 
WantoN said:
Thanks for this, really appreciate it. I've already had a big surgery on my abdomen (16cm incision) so I'm not too concerned about that bit. I just hear some people with a J pouch go 4 to 6 times a day and it's very watery. Was wondering about urgency etc.

I take a lot of medication so I completely understand you wanting off it all!
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Jeez I've gone 4-6 times within the first hour of waking up. I was always 3 times a day when healthy. If I ate 3 times, I pooped 3 times. Thought that was normal. My OH can go twice a week. I'd burst and it wouldn't be pretty going only twice a week.
 
mattyg said:
Jeez I've gone 4-6 times within the first hour of waking up. I was always 3 times a day when healthy. If I ate 3 times, I pooped 3 times. Thought that was normal. My OH can go twice a week. I'd burst and it wouldn't be pretty going only twice a week.
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To clarify when badly flaring I was going about 23 times a day if I was lucky. On Clipper, Vedolizumab, Azathioprine and Mesalazine I am ok, but if it stop the Clipper I flare badly again. I'm likely having my large intestine removed.

I'm trying to understand if frequency and urgency is controllable with the J pouch operation which reverses a stoma. As I'd rather live with a bag than go backwards.
 
WantoN said:
To clarify when badly flaring I was going about 23 times a day if I was lucky. On Clipper, Vedolizumab, Azathioprine and Mesalazine I am ok, but if it stop the Clipper I flare badly again. I'm likely having my large intestine removed.

I'm trying to understand if frequency and urgency is controllable with the J pouch operation which reverses a stoma. As I'd rather live with a bag than go backwards.
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I've not done a massive amount of reading up on the J-pouch but my current understanding is if all goes well then your pretty much fixed.

I wonder if anyone has had a bowel transplanted from a healthy/Dead doner


I hit 40 times one day. I was red raw, and going through 3-4 rolls a day. I kept a diary and the amount of times I would get half way down the stairs and have to turn around and do the sideways shuffle back up again.
I've been spraying the bowl with bloody mucous 10-15 x a day for a few weeks now everytime I pass wind I have to be sat on the bowl.

The Pred is taking its time kicking in at the moment. When I was first diagnosed it only took 3 days before I was back to 3x a day and almost normal.
I'm off the Imodium now though and I've only been 12x today and more stools than wind..6-7 on the bristol chart.
 
Ugh, colitis sucks.

I had a really bad flare up almost couple of months ago, ended up staying in hospital for a bit over 3 weeks, no surgery needed thankfully, I was lucky it wasn't any worse.

I've had flare ups before but nothing compared to the last one I had, going to the toilet every hour constantly 24/7 for like an entire week and throwing up half of the time, not fun at all.
 
mattyg said:
I've not done a massive amount of reading up on the J-pouch but my current understanding is if all goes well then your pretty much fixed.

I wonder if anyone has had a bowel transplanted from a healthy/Dead doner


I hit 40 times one day. I was red raw, and going through 3-4 rolls a day. I kept a diary and the amount of times I would get half way down the stairs and have to turn around and do the sideways shuffle back up again.
I've been spraying the bowl with bloody mucous 10-15 x a day for a few weeks now everytime I pass wind I have to be sat on the bowl.

The Pred is taking its time kicking in at the moment. When I was first diagnosed it only took 3 days before I was back to 3x a day and almost normal.
I'm off the Imodium now though and I've only been 12x today and more stools than wind..6-7 on the bristol chart.
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If everything goes well (you get a good surgeon, take their time and dont rush the stages, can leave minimal of the "cuff" etc) then it is way better. I am however more prone to spicy food, if i eat something too spicy then feels like what I imagine the Amazon reviews of sugar free haribo is like. I have had one small bout of pouchitis but cleared up easily with antibiotics. Had a pouch since 2005 now, hasn't stopped me doing anything, even did the Dunwich Dynamo (overnight bike ride) with no issues, although any situation I feel I may not be near a toilet for ages I just bring an andrex travel size roll.
 
mattyg said:
The Pred is taking its time kicking in at the moment. When I was first diagnosed it only took 3 days before I was back to 3x a day and almost normal.
I'm off the Imodium now though and I've only been 12x today and more stools than wind..6-7 on the bristol chart.
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I never liked Pred, I was on it for about 17 months and it never completely cured me. The side effects got worse and worse until I couldn't tolerate it anymore. Budesonide was effective but same problem, went loopy.

Clipper (Beclametasone Diproprionate??) was completely different. It works fast with almost no side effects for me, and 5mg does more than 40mg of Pres ever did. I've only ever taken it with Humira or Vedolizumab though.
 
mattyg said:
I hit 40 times one day. I was red raw, and going through 3-4 rolls a day. I kept a diary and the amount of times I would get half way down the stairs and have to turn around and do the sideways shuffle back up again.
I've been spraying the bowl with bloody mucous 10-15 x a day for a few weeks now everytime I pass wind I have to be sat on the bowl.

The Pred is taking its time kicking in at the moment. When I was first diagnosed it only took 3 days before I was back to 3x a day and almost normal.
I'm off the Imodium now though and I've only been 12x today and more stools than wind..6-7 on the bristol chart.
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Oh man, I really hope you get better soon. That sounds awful :(
 
dirtychinchilla said:
Oh man, I really hope you get better soon. That sounds awful :(
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Cheers.

I don't have it bad compared to some.

The Pred has kicked in now had two good days. No mad panics. Still mucous and wet farts, so have to pass wind on the pot but I'ts getting there. I was supposed to have a follow up today but it got cancelled 45 mins before hand as my Gastro nurse wasn't available. Not an issue as we've rescheduled for 2 weeks which should see me well into the course of Pred so will know for sure if its working.


WantoN said:
I never liked Pred, I was on it for about 17 months and it never completely cured me. The side effects got worse and worse until I couldn't tolerate it anymore. Budesonide was effective but same problem, went loopy.

Clipper (Beclametasone Diproprionate??) was completely different. It works fast with almost no side effects for me, and 5mg does more than 40mg of Pres ever did. I've only ever taken it with Humira or Vedolizumab though.
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Not heard of Clipper before this thread. I'll ask next appointment. Although she did want to see me at the same time as the Dr to discuss other options.
 
mattyg said:
Not heard of Clipper before this thread. I'll ask next appointment. Although she did want to see me at the same time as the Dr to discuss other options.
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I hope you get on ok. It really is the only steroid that's done this much. I can live a pretty normal life until the surgery if it keeps going like this.

Good luck.
 
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