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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

Sorry to hear you're suffering l4k. How are you now?

How's everyone else? Were any of you lucky enough to be picked to try the Aveda hair thickening range?

Thanks for the link to the serum MrsP. Don't think it'll be of any help now though. Hair is dropping out everywhere at the moment. I'm sure it's due to the Imuran/Azathiorpine. Had a look at side effects and apparently most people that are unfortunate enough to suffer hair loss as a side effect lose about 50%. Bit worrying as it was already thin.

DP cut it for me on Sunday. It had got to shoulder length having had it cut into a bob a while ago when it started getting noticeably thinner. Anyway, the silly great sausage fingers started at just below my ear on the right side but was obviously cutting upwards as when he got to my left ear he was cutting up near the top of my ear. When I gasped and said it was too short he plonked the scissors down and said he wouldn't touch it again. I've hacked at it a bit but I can't do the back. So now I'm almost bald and wonky. I hate UC!

Anyway, I stopped taking the Aza and steroids about two weeks ago due to the hair loss so now I'm back to square one with bleeding, urgency and pain. Can't go to my GP or Consultant (who I haven't seen since April) as I've just stopped the tablets and I won't take steroids again. I'm in a bit of a pickle really. I'd like to manage this with diet and not pills. Can anyone recommend a dietician or nutritionist near South London?

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.

Hi again,

Thanks for the replies. How are you now Spider? L4k how are you feeling? Is your gastroscopy tomorrow? I hope all goes well and that your MRI results can shed some light on what's going on.

No, no nurse. I was seeing my consultant privately and never saw a nurse. When Bupa stopped paying for the consultations (They paid for follow up appointments for six months after flexi sig) he said I could see him at his NHS clinic but my Dr needed to refer me. Twice I've asked and been told by the receptionist that the request is on his file. Yet, still no appointment.

If I'm honest I know I should be making more fuss but I know he'll be cross that I've taken matters in to my own hands by stopping all meds so it seems pointless going to see him. I'm in a bit of a mess here really. Back to square one - Pain, blood, fatigue, dashing to the loo day and night and often not getting there in time. Frightened to eat - today I've had two slices of Weight Watchers white Danish bread with a dry fried egg and a Dime bar. Yesterday I had a grilled lamb steak and a packet of French Fries.

On the plus side before I stopped the steroids and Imuran I was almost 10st 7lbs. I'm now down to 9st 10lbs. Another couple of weeks and I should be back to my normal 9st or thereabouts.

I'd really like to know how to manage UC with diet as I'll never take another steroid. I know I'm not eating enough so I need to find out what I can eat in small amounts that also contains some goodness as I have very little hair now and still it's falling. I need to feed my follicles!

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.

Thanks for the link Spider. I'll have a look in a mo. Lucky you re remission envy Are you taking any medication at all?

Hi Funny, How are you now? Are you avoiding wheat and or gluten?

I'm not sure it's what I eat that causes the loo dash as just a few mouthfuls of water send me running. It must be my digestive system getting all excited when something hits my stomach. I know certain foods or too much at once causes stomach pain so I'm just eating very small amounts.

Pill wise, is there an alternative to steroids? They really helped but I hate the insomnia, weight gain and face like a beachball.

L4k - Hope you're ok. How did everything go today?

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.

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.

Hello again,

L4k, glad it all went ok yesterday. It's great that you're going to be referred to a dietician. Hopefully the exclusion diet will help to identify your trigger foods. Have you tried drinking peppermint oil in warm water when your stomach is hurting? I found it helped when I had IBS years ago. If the exclusion diet doesn't help then hopefully you can have another gastroscopy or flexi-sig/colonoscopy as I've read that being diagnosed with UC or Crohns can be tricky if you're not in the midst of a flare up at the time.

Buttermintoes, thanks for your fab post. It must be great to be not only symptom free but not having to take medication every day.

Spider, sorry for my ignorance but do you take the Pentasa powder orally? Only, I have Pentasa suppositories which I'm suppose to use every night but 1: They're painful to put in and 2: They don't stay in as I'm back on the loo within five or ten minutes! I don't want to keep putting another one in as I don't know if you can "overdose" your rear end?

Mrs P, pleased to read that you're still managing really well. Can I ask how long the hair loss carried on for after you stopped the Aza/Imuran and if you're seeing improvements now?

Well, I bit the bullet this morning, two bullets in fact - I rang my surgery to ask if the letter of referral had been sent and they said it had, back at the beginning of August! She gave me the number of my consultants NHS clinic over at East Surrey Hospital. I rang and they hadn't heard of me or had the letter. Receptionist was very nice and said she would ring my Dr and see if they could get the letter re-sent and would ring me back today to let me know what was happening. So hopefully will have an appointment soon.

Second bullet - Despite my protestations I took 5mg of Pred this morning. Not sure if that small amount will help but when I first started reducing the 40mg dose by 5mg and the symptoms returned I found increasing by 5mg for a few days settled things.

Small update - The receptionist from East Surrey Hosp called back to say that my Drs letter had now been faxed over to her and that it was dated 1st Aug so she has no idea why they didn't receive it sooner. Anyway, they have it now and I should hear from them regarding an appointment. Hopefully it'll be soon.

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.

No, sorry I didn't phrase that very well. I meant that hopefully if the exclusion diet doesn't help then you can have a colonoscopy or a flexi-sig or another gastroscopy.

How are you feeling now?

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.

"I feel a fraud having you concerned about someone with bloody ibs when you are ill. Please take care of yourself."

Don't be silly! I suffered for years with painful IBS. I remember being in agony for hours before discovering Colpermin and peppermint oil. The pain is much sharper than UC pain so I do sympathise.

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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