Crohns / ulcerative colitis sufferers

Thought I'd post here in case it might help anyone, my fiancé has had UC for three and a bit years now, been through mesazaline granules pred azathioprine methotrexate adlimab infliximab vedmab and so on, mixed results with pred being the only thing that reduced symptoms but obviously comes with a lot of side effects.

Well a few months ago she had a rash on her face unrelated and went to the pharmacy to get some antihistamines (fexofenadine) and solid poops within three days, first time without pred in years.

After the one week course had finished we've got it on prescription. Waiting on tests but it's been three months and symptoms are a lot better.

I haven't seen many posts about fexofenadine as a UC treatment, so thought it's worth mentioning

She's on tofacitinib as well at the moment.
 
Wow, good for her!!

I came here to post my sob story, so sorry to **** on your happy news.

I'm in hospital having had a potential bowel obstruction investigated. Fortunately, there wasn't one but I was very constipated. But, they have decided they can't wait much longer to remove my strictures, so that's fun. They've put me on a liquid diet for the next two months, which really sucks. The drinks aren't even nice...I don't get it. Why make something that will be someone's entire diet not taste nice?!
 
dirtychinchilla said:
They've put me on a liquid diet for the next two months, which really sucks. The drinks aren't even nice...I don't get it. Why make something that will be someone's entire diet not taste nice?!
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Is it the Nestle stuff - modulen?

If so you can add some flavouring to it - surprise surprise Nesquick milkshake power by Nestle is allowed!

IIRC things like hard sweets you can see through - like glacier mints are allowed, you can suck those and they're basically a clear liquid. I thought jelly was allowed too (apparently it isn't) and the surgeon said my bowels were in good condition so maybe it's not a big deal. Also, Bovril is supposed to be OK IIRC.

The other thing is that while Modulen has the Casein that Nestle claims helps it seems there is some evidence that other liquid diets can do just as well for this so if you're really not loving the Modulen (assuming that's what you're on) then you could perhaps push for something else like the fortisip shakes - they come in a bunch of different flavours and are basically nutritious milkshakes. :)
 
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dowie said:
Is it the Nestle stuff - modulen?

If so you can add some flavouring to it - surprise surprise Nesquick milkshake power by Nestle is allowed!

IIRC things like hard sweets you can see through - like glacier mints are allowed, you can suck those and they're basically a clear liquid. I thought jelly was allowed too (apparently it isn't) and the surgeon said my bowels were in good condition so maybe it's not a big deal. Also, Bovril is supposed to be OK IIRC.

The other thing is that while Modulen has the Casein that Nestle claims helps it seems there is some evidence that other liquid diets can do just as well for this so if you're really not loving the Modulen (assuming that's what you're on) then you could perhaps push for something else like the fortisip shakes - they come in a bunch of different flavours and are basically nutritious milkshakes. :)
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Hah! No it's not. They couldn't give me Fortisip, which their first choice, or Modulen because I'm also lactose intolerant. Therefore, I'm on some obscure one that they're finding very hard to source.

To be honest, I'm not going to take it super seriously because they're just trying to prevent a bowel obstruction, not put me into remission. I can tolerate certain things very easily, it was just proper meals that we're killing me. I think the goal of this sort of diet is normally to put you into remission, but I actually am in remission. I have no active inflammation. It's just the strictures are scar tissue and the medication does nothing for them.

If you google liquid diets for this sort of thing, they say it's fine to have any liquid stuff really e.g. custard or (oat) milk etc. so I'll have those to keep me sane.
 
dirtychinchilla said:
Hah! No it's not. They couldn't give me Fortisip, which their first choice, or Modulen because I'm also lactose intolerant. Therefore, I'm on some obscure one that they're finding very hard to source.

To be honest, I'm not going to take it super seriously because they're just trying to prevent a bowel obstruction, not put me into remission. I can tolerate certain things very easily, it was just proper meals that we're killing me. I think the goal of this sort of diet is normally to put you into remission, but I actually am in remission. I have no active inflammation. It's just the strictures are scar tissue and the medication does nothing for them.

If you google liquid diets for this sort of thing, they say it's fine to have any liquid stuff really e.g. custard or (oat) milk etc. so I'll have those to keep me sane.
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Is the drink called Ensure plus?
 
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ColdAsIce said:
This some crazy post code lottery hell you are describing. I'm not sure I understand how the NHS cannot provide the drugs you need.
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It's because the NHS has a very finite amount of resources. It would bankrupt itself in a year if anyone and everyone got very costy drugs without proper consideration, avoiding that also includes trying 'cheaper' (but often effective) drugs.
 
dirtychinchilla said:
Has anyone had a resection? I've got two or three strictures to come out and I was just wondering what the recovery is like.
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Two resections here but the last one was a few years back. Recovery time was 2-3 weeks in hospital plus more time at home just resting. My cousin basically has keyhole last year and was out in days. So things might have improved? There wasn’t even any drugs like humira that existed in the market place when I had my last surgery. Also agree with you, the liquid diet is just to give your system a rest. It’s not a fix.
 
dirtychinchilla said:
Has anyone had a resection? I've got two or three strictures to come out and I was just wondering what the recovery is like.
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Had one a few years ago and was out in a few days - can barely see any marks from the smaller incisions (in fact they're mostly invisible but for a couple of tiny marks and I couldn't really say if they were from the bowel surgery or from an earlier op) there is also a small, couple of inches long vertical incision above and below my belly button and that isn't particularly visible either.

Recovery was a few days - it's not fully keyhole, they do need to remove the bit of bowel through a larger incision but it's as minimally invasive as possible. The hospital I went to (St Thomas') practices "enhanced recovery" so as to get people out much sooner - basically a nurse comes around the day after your operation to get you out of bed and walking around the ward.

You have the option of an epidural - I'd had surgery before - on my knee and one previous abdominal surgery and was quite confident that morphine works well etc.. so passed on the epidural (there's a tiny risk of complications like it paralysing you etc.. and didn't fancy having it stuck in my back after too) but that may have been a mistake - unfortunately woke up form this operation in a lot of pain!!! They gave me fentanyl and maxed that out and I was like "I don't mean to be a pain here and I'm not one to seek drugs but this is still painful AF.. could I have some more please" so they then gave me a load of morphine too unsurprisingly this did cause me to vomit a few hours later. So maybe do consider the epidural! :)

Obvs you get hooked up to a morphine drip too which you can control (albeit with a cap) and to be honest the pain had died down a lot after the first night - was able to walk around in the morning.

Another thing to note - lots of nurses are busy AF and with some things if it's not on a tick box chart then they don't know and need to check - I had errors with medication two days in a row - a problem with the pharmacy but the correction got lost in translation too and they still got it wrong the next day too (luckily I brought some of my own supply but they really don't like that) also if you get hooked up to a urine bag but this isn't needed for that long and they ought to remove it... but that may take some prompting - if you're up and walking the next day then it's worth flagging up a question if you still have it in as they won't necessarily be proactive about it.

The worst thing I saw was a guy in the bed opposite - he'd had an operation too (maybe a resection) but there was some sort of issue/partial obstruction post-surgery so he'd had a tube down his nose for a few days. It was taken out and later that day he was able to get out of bed and go have a shower... moments later his wife is screaming for help, crash team comes running etc.. he'd immediately passed out and smacked his head in the shower. Doctors checked him over, he was fine, just a bit bruised and tired... they leave....

... curtain pulled back again and I ask if he's OK, he explained that he'd just fainted and he's super lightheaded, hasn't eaten for several days and nurses said he can't have food because of the obstruction issue. I suggested to him "you know you can ask for fortisip drinks on this ward" (a gastro surgery recovery ward) - he asks for one from the nurses and was surprised to see them say sure and they brought him one right away, not long after he's feeling sooo much better! That whole fainting incident probably could have been avoided if some staff had been a bit more proactive re: a patient not having eaten for days.
 
@dowie thanks for the detailed response! What I immediately took from that is a. don't worry about it too much and b. get the ******* epidural. My back hurts anyway so that could be a pleasant relief. Unfortunately, I am one of those types of people that goes seeking drugs, so anything upfront is probably better.

I've found that if you want to get anything done whilst in hospital, you basically have to do it / sort it out yourself.. I'll be making sure they take away my **** sack ASAP. I've probably had worse operations (fistula drainage / removal).

Oh god, poor guy. No wonder he was hungry!
 
I had my surgical consultancy today. They are going to remove the diseased area of my small intestine. They're planning to do it within the next 12 weeks, which is apparently what urgent means! So I'll be on the liquid diet until then.

I've been sticking to the liquid diet for probably 70% of my meals, but I've been having crackers and then either eggs on toast or soap and toast for dinner, so that I don't lose my mind. It's going well - haven't felt sick for over two weeks now :)
 
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Had a routine colonoscopy for my UC last Friday, been a few years since my last - my oh my I’d forgotten what fun they were. Made all the more-so as I had to drive myself there and back so had to go sedation free :(

I’ve only mild colitis so you guys with the more severe symptoms have my utmost sympathies.
 
robfosters said:
If it’s ok to ask, can you guys with UC tell me what your symptoms are please. I appreciate it can be a bit crude and personal, but we’re all friends here
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For me it was mainly lots of blood when going for a number 2 and unimaginable cramping pains in my stomach. Anaemia and feeling dizzy and out of breath easily. Higher than usual heart rate when flaring / losing blood.

Also massive tiredness and lack of energy was a big issue.
 
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