Ulcerative colitis or proctitis

[Bubbletrouble2]

Hi all my DH had a colonscopy and they said he has proctitis.. they sent off biopsy’s and jus sent him on he’s way with no medication.. he’s still having loads of blood and all sorts..

we rang the hosp last week they said get in touch with ur GP until biopsy results are back so we rang the GP who said there’s nothing the can give ! So what do we do it’s still on going .. any help or advice please x

Nothing shall surprise me any longer. Just left with nothing?

So inflammation of the anal passage is often autoimmune. Did they even say that? The biopsy provides more information and then you know exactly what's going on ( colitis, Crohn's or infection). Then you can say I want treatment please.

Treatment could be suppositories ( I use them. They're pretty effective in proctitis. You have steroids suppositories but I have ones that tackle the inflammation and heal the tract). You have foams you can use ( I find these awful personally).

I don't think the GP can prescribe any of this so what use is the GP. What a ridiculous suggestion.

Is there an IBD team at the hospital? That's who you need go through. If he's really suffering and in pain you need to push them alot. You need to be incredibly assertive with some of these things I'm sorry to say.

At home, soaking his bum in a warm clean bath could relieve discomfort if that's a problem. A little bidet with hot water in the toilet seat can also provide comfort.

Once biopsy results are in I think that's when you can get more answers and treatment.

Yeah literally left him with nothing and GP is saying to wait now .. he’s bleeding every day very tired it’s just not fair how we are left to it even with a colonoscopy.. I thought we would get some answers and medication but it’s really not that..

thanks for all your advice wel try the hot water as he’s but hole does hurt …
do u have ulcerative colitis ?

Same happened with my DH, he had colonoscopy September 2023, was told after it was likely he had colitis but would be confirmed after biopsy. Because he was referred through the bowel screening testing, they called him when the results were in to tell him that yes he has colitis and an appointment would be made with consultant January 2024, he said what can he do in the meantime and like your DH was told to ring GP, who said she couldn’t prescribe anything until he’d seen the consultant. Out of the blue about a week after he received a phone call from the gastro team, who immediately put him on medication, which was fortunate as his appointment with consultant was cancelled and it seems his main contact now is with the gastro team.

Yes I have many autoimmune problems affecting my bowels.

I would search online for the IBD team for the hospital in question. Most have an answer machine service if no one available.

You say ' the GP cannot prescribe anything for bleeding/ inflamed rectum from suspected colitis/ proctitis. Please can someone prescribe something for my husband. He is unwell, losing bloody and in need of something. Can we please speak to someone regarding some sort of suppositories to help control this whilst we await contact from the gastro. His consultant gastro is xyz'

You have to chase these people. I know it's crazy. I've been left in some quite horrific states requiring surgery in the end - told go to your GP whilst crawling on the floor crying. I'm telling you this so that you become assertive. People don't realise that you actually can just get left to it until they experience this. Please don't worry about being a nuisance etc because they will happily leave him if you don't demand something.

The GP can do absolutely nothing here without directions from the consultant or an IBD team.

One thing a good GP might do is put pressure on the appropriate services at the hospital ( IBD team/ gastro). But you have to be saying ' pain,bleeding, discomfort, lethargy, daily blood loss' you have to say please can someone prescribe something's asap. This is not ok to be left like this. You need to be saying these things.

You cannot downplay one little thing trust me. Years of experiences with all this stuff.

@Bubbletrouble2 this is awful he’s got no treatment or support! I was diagnosed with ulcerative proctitis nearly a decade ago after going private cause I couldn’t handle the pain and bleeding anymore and immediately after the colonoscopy, like there and then in the hospital, I was given:

a strong steroid course
twice daily foam enemas
vitamin d tablets
loads of info about diet
advice about iron supplements (can make stomach pain worse but I found liquid iron or iron transfusion okay)
a lengthy sick note as it requires recovery time

I had regular follow ups until it was in remission and then twice annual hospital appointments. And if I ever need support or feel unwell there is a dedicated IBD nurse phone number you call and get a response within 24 hours.

Mine later developed from proctitis to full colitis which sucked but treatment has been faultless.

Im so sorry your DH has been left in this position. That’s shocking. From my experience, steroids are usually needed to control a flare. Although I’ve also had success over the years with biological treatments though my understanding is usually they’ll go with a lower impact treatment first and see if that works.

PP is right about GP not being able to do anything. Mine openly will say she hasn’t a clue about IBD. I don’t ever go to GP about mine. Everything is done via the hospital gastro specialists.

Dh is a Gastroenterologist and he hits the roof when this sort of thing happens! He's put massive posters up in all the Endoscopy rooms now giving instructions that any proctitis has to be referred immediately to the Gastro team, and treatment to be prescribed immediately as well.

Your GP can (or should be able) to refer to the IBD specialist nurses. There will be a helpline that the GP can leave a message on with your dh's details. Insist they do this.

They have just yesterday referred him to the advice and guidance team only .. I am really feduo of the nhs and hthen treating him like it’s nothing when the poor thing is suffering.. we have been GP and they keep saying they have to wait for biopsy results …

I think that's bollox as a gastro can see when they do a colonoscopy that it's inflammation. They can also often tell by looking whether it's Crohn's or Colitis. Either way, they know there's inflammation there as have seen it with their own bloody eye balls . The GP really can't prescribe but they can put pressure on. You need to speak to someone asap. If they don't help you with applying pressure then you must go straight to the hospital. Call every gastro related service! Call the IBD team, ask to be put through to the secretary for the consultant gastro who did the procedure.

This ' we must wait for a biopsy result ' nonsense is just that. They'd prescribe the same thing either way, unless this is some random anal infection which is unlikely.

Mezalazine is the product often used within foams or suppositories. Within a few days of using those he could get relief. Steroid suppositories help also short term. Oral steroids ( by mouth) are a dodgy road to go down but have their place.

I recall gastros telling me straight after colonoscopy ' you have colitis '. We've taken biopsy just to double check. Either way, given treatment straight away.

OK advice and guidance should be monitored by the Consultants, so one of them should pick this up. Because of Christmas it might take a couple of days.

Also, what we did as Consultant appointment was 3 months away, we looked him up and booked a private consultation with him, but it wasn’t needed as he was prescribed daily foam enemas and inflammation medication by gastro team in telephone appointment. Unfortunately until you get biopsy results they don’t know what type of IBD you have.

Hi all phoned the secretary of the surgeon who did it and she just said if he felt he needed medication he would have prescribed it and she said to wait for the biopsy results. !! It’s really not fair

I doubt a surgeon would to be honest, it tends to be the Gastro team that are the experts on inflammatory bowel diseases. Has the GP heard back from the advice and guidance line? Although there may be a backlog on that from the bank holidays.

I was diagnosed in my early 20s. I'm sure I was given a course of steroids to help. I've never heard of someone being told they would not prescribe meds. How odd.
Join a few groups on FB and ask on there.

I get on well using Salofalk enemas. The steroids are only for short term use. The fatigue from this disease is horrendous. Hopefully, he'll get access to IBD nurse pretty soon. They're hugely overworked. Luckily mine always responds to emails when I'm in a bad flare and provides me with extra meds.

Can you get a second opinion or app with a different GP ? At the very least they should give something for the pain ! That's very poor care of it is ulcerative colitis that's very debilitating and very painful as I'm sure your poor DH well knows.

Ah I wonder if the surgeon doesn't specialise in IBD. If it isn't a reputable teaching hospital then I'd expect a lower standard of expertise in all this tbh.

Is there an IBD team or service at the hospital. You need to go to them if you're left waiting. Look online as they usually have the details.

An enema or suppository for IBD can and probably would provide quite alot of relief here as a first line option. My ass is in absolute bits and a suppository really is horrible at first once you try with alot of inflammation but within a day those suppositories can work wonders.

What else does the surgeon think is going on here. I don't know if he's just being incredibly cautious in case he has some ass eating infection ( highly unlikely). It sounds like IBD is not his speciality.