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Could this be Ulcerative Colitis?

(901 Posts)
Chocol8 Tue 25-Oct-11 22:12:18

Sorry this is gross, but i am worried and looked online (prob not the best of ideas) and found that most of my symptoms seem to fit UC: different coloured stools which frequently changes but is mostly very loose.
Blood in stools (a lot), if i pass wind, i can pass pure blood but usually mess myself (very unpleasant), stomach churns constantly.
Being sent (eventually) for a colonoscopy to have a look see. Does anyone know what else this could be please? x

OldBagWantsNewBag Thu 11-Oct-12 16:24:29

Message withdrawn at poster's request.

l4k Thu 11-Oct-12 22:47:45

old bag , that all sounds pretty crappy. Can you not go back to gp or consultant and say these meds are not acceptable due to the side effects, so what else can I try - please? And can you refer me to a dietician while your at it.
No treatment can't be good though, surely? Poor you, i'm sorry you are suffering.
I'm feeling a bit better this week, the constant pain has gone and just have the occasional bad cramps again now.Don't know what that means in terms of diagnosis.Having a gastroscopy next thursday and will get the results of the small bowel MRI then.

spiderlight Wed 17-Oct-12 15:15:10

Oh OldBag sad Have you got a specialist IBD nurse you could talk to? I get much more sense from my nurse than from any of the doctors.

OldBagWantsNewBag Wed 17-Oct-12 21:06:45

Message withdrawn at poster's request.

funnyperson Thu 18-Oct-12 01:32:17

Try gram flour instead of wheat flour when you cook stuff. Take your meds? I'm too scared to stop taking mine I would land up in hospital ill within days.

funnyperson Thu 18-Oct-12 01:33:02

Also rye bread?

spiderlight Thu 18-Oct-12 10:09:59

Hair loss support thread that's just started. There's somebody else with UC on there as well.

I've got a book called 'what to eat with IBD' that is quite useful - got it from Amazon. My friend has recommended that I see a naturopath for dietary advice, but I haven't been yet because - I'm almost embarrassed to say this when everyone else is still feeling crap - I'm still in remission. Nearly a year now.

Nag your GP for a referral - you need a poo nurse! They seem to be far more useful than the consultants.

OldBagWantsNewBag Thu 18-Oct-12 13:00:09

Message withdrawn at poster's request.

buttermintoes Thu 18-Oct-12 13:49:41

Hi everyone,
I came across this thread by accident today when it showed up in Active.
I just wanted to throw in another perspective here. Any time anyone has mentioned surgery on this thread it has been almost whispered in tones of horror. I've had the dreaded surgery – subtotal colectomy – which is the removal of my entire colon, leaving just the rectum. Granted, there was no choice in the matter (and to be honest, I don't remember a lot of it) but my UC was "florid" and infected throughout my colon, my entire system was toxic so it was surgery or die.
Reading through this thread made me cry, bringing back dreadful memories, the pain, the preps for the procedures, the procedures, the steroids, the transfusions. I remember having to abandon my place in a ToysRUs queue for a thin on the ground Buzz Lightyear toy (after I had somehow managed to queue for 2 hours)because I HAD to go. I've been where you are. I KNOW what it's like.
The surgery was the best thing that ever happened to me. Yes, I had to cope with an ileostomy for about 18 months, but then I had some miraculous reconstructive surgery, which got rid of the ileosomy and now, other than regular B12 injections and occasionally a few doses of loperamide, I've got my life back. No meds, eat whatever I want. Yes, I still need to use the loo more often than most "normal" folk, but it is controlled and I don't think twice about shopping trips, gigs, walks– all the things that used to fill me with terror.
I hope telling you about my experience will reassure you, should the dreaded word surgery be mentioned by your consultant. Of course, it wasn't much fun at the time, but I can honestly say I haven't given my UC a second thought for at least 5 or 6 years now (had reconstructive surgery about 7/8 years ago).
My best wishes to all of you who are suffering from this horrible complaint.
I hope the two posters who dropped off the radar are ok and reappear sometime soon.

l4k Thu 18-Oct-12 13:58:35

I'm sure there are more than one alternative but I'm no expert.Hopefully someone will come and tell you who has more info. I really think you should at least take with your gp about it. Maybe they could refer you to a dietician.
Thanks for asking.
Because I've got private health insurance I've gone private to get seen quicker.The down side is my diagnostic gastroscopy is not till 5:30 pm, when his nhs list is finished I suppose.
I am much better than I was 2 weeks or so ago,still have abdo pain every day but not constantly and only having 2 bm a day. Have been strictly gluten free and tried cutting down on fresh veg which seems to be helping but doesn't feel healthy.I don't eat much fruit as it is anyway.
I'm not sure the gastro consultant really understood how much pain I was in.I've been thinking about it and it was a bit worse than the post op pain from when I had a hysterectomy, bladder prolaspe repair, rectocele repair and perinium repair all at once last year. It hurt like that on and off for about 5 - 7 days and woke me early.I would really like to know if that can be just ibs ?
Feeling a bit anxious.

MrsPinotGrigio Thu 18-Oct-12 21:35:10

Hello everyone its been ages.

l4k good luck with your gatroscopy - hope you get a result & find out what's wrong. As I always say not knowing is worse, at least when you have a diagnosis you can start dealing with it. I've got Crohn's & so far I'm managing it really well. Mine was diagnosed with a CT scan as the colonoscopy had showed inflammation in the large bowel but no Crohn's. Mine's in the small bowel which apparantly is better as its easier to get under control & keep that way. So far I'm managing with a few small changes to my diet & the 6MP. The pain & symptoms you describe definately don't sound like IBS - I was in agony with the Crohn's before I was admitted to hospital (tbh it was worse than giving birth as there was no end to it), I wasn't on the loo constantly either but when I needed to go, I needed to go straight away.

Oldbag that sounds awful, sorry you're still so poorly. I think you really do need to start getting on to your GP for the referral. Once you get into an NHS clinic you should have access to a poo nurse & dietician & I found them invaluable when I was first diagnosed. Also you'll be able to discuss your meds - I'm sure there must be alternatives to steroids & I know theres an alternative to Aza cos I'm on 6MP having been switched due to the hair loss.

Hi spider & funny hope you're both ok.

I'm doing great - off on holiday in 2 weeks & looking forward to some sunshine.

Take care all.

l4k Fri 19-Oct-12 10:01:50

Buttermintoes, we cross posted. That will be a very positive story to many on this thread. Glad you're so well.
MrsP, Glad to hear you're feeling good too.
I had the gastroscope. It was horrid but quick. He took boipsys ( I felt it too) and I'll get the results in 2 weeks. I asked for the MRI results and he didnt even know I'd had it yet . He looked on the screen and said it was fine, no sign of inflammation . So he thinks it just ibs and food sensitivities and when the boipsys are back ( normal) hell send me to a dietician to work out through an exclusion diet what I react to.
So that's that. I suppose it is just ibs after all.
Obviously it's better than having ibd so I should be pleased. If I can control it with diet I will be happy.
Hugs to old bag.

spiderlight Fri 19-Oct-12 11:32:40

Buttermintoes - that's a really positrive and very valuable post. Thank you.

OldBag, I'm on one 2g sachet of Pentasa powder every morning but that's all. Considering dropping it for a few days to see what happens but I don't want to jinx things when I'm doing so well.

l4k - I'm glad it's 'just' IBS but that's not much fun either. Hope you manage to get it under control with diet.

OldBagWantsNewBag Fri 19-Oct-12 14:01:25

Message withdrawn at poster's request.

OldBagWantsNewBag Fri 19-Oct-12 16:23:05

Message withdrawn at poster's request.

l4k Fri 19-Oct-12 18:34:27

Well done oldbag, looks like you're getting somewhere. I just hope it's not too long.
I'm going to give the dietician my best shot. I have never had a colonoscopy btw.

OldBagWantsNewBag Fri 19-Oct-12 18:53:47

Message withdrawn at poster's request.

l4k Fri 19-Oct-12 22:31:55

I was feeling ok but this evening my guts have started churning and gurgling again and have abdo bloating and pain.
I'll have to wait and see how I get on with the diet.
And I see what you mean about further tests if things don't improve.
I feel a fraud having you concerned about someone with bloody ibs when you are ill. Please take care of yourself.

OldBagWantsNewBag Fri 19-Oct-12 23:26:38

Message withdrawn at poster's request.

spiderlight Mon 29-Oct-12 19:04:13

Oldbag, yes, I take Pentasa orally. Started out with eight mahoosive tablets a day that were horrible to swallow, but am now down to one small sachet of powder, which is the maintenance dose.

Dawndonna Tue 30-Oct-12 19:02:36

I've had this thread on 'watch' for ages. I am terrified. I have been to the docs.
I'll try to explain. I started bleeding in september. Not a lot, always fresh. Basically on the outide of the stool, or bloodstained mucus. I bleed everyday. I have either poo stained, blood stained or clear mucus every day. Some days are worse than others. It starts off fairly solid and ends up soft. Some days I'm in the loo from 7am until 11am. Some days I go once, pass mucus in the evening, once and that's it. Other days, don't like to leave the house. No significant pain. I was referred two weeks ago for a sigmoidoscopy. That's in the second week of December. Bloods are fine. Had two lots taken. I have been stress wise, to hell and back this year, and am still very stressed. Any ideas please? Oh, and should I be hassling for an earlier appointment? Thank you.

funnyperson Wed 31-Oct-12 03:05:46

If you get severe tummy pain, feel ill, sick and temp then go to casualty otherwise wait for Dec. Good luck!

mahi1 Wed 31-Oct-12 07:13:37

Specific foods or eating habits don't cause ulcerative colitis, but they can make it worse

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Dawndonna Thu 08-Nov-12 19:22:27

Thank you. I really don't get pain. I just need to go, and when I do it's bloody mucus first. Sometimes it's just that. And when I need to go, I really need to go, no waiting.
I'm sorry, I don't follow the cosmetic surgery link?

spiderlight Mon 21-Jan-13 12:31:45

Is anyone still out there? How are we all? I'm having a flare-up, probably because I had a miscarriage just before Christmas and then really blad flu, so I'm feeling a bit woeful. I'd been in remission for so long that I thought it might actually have all gone away.

Hope everyone else is a bit better than they were. Did anyone hear from Chocol8 or Ava at all?

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