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A couple of questions about Crohns/ulcerative colitis/IBD.

(35 Posts)
OldBagWantsNewBag Sat 25-Jun-11 12:38:16

Message withdrawn at poster's request.

SJisontheway Sat 25-Jun-11 13:04:51

Hi. Sorry you're feeling so run down. DH has UC. I have a few comments based on his experience. There are a number of different medications available and especially in the early years they had to do a lot of playing around with the meds until he found one that suited him. He has a very good doctor that he sees fairly regularly to review. When he has a bad bout he often goes on a course of steroids to bring it under control. If you're symptoms aren't improving I would be going back to the doctor for further advice. His general health has been pretty good other than the UC. Hopefully you are just having a bad run. The most important thing for him in managing the UC is looking after himself, not getting run down and acting early when he has a relapse. He used to just struggle on, but if he acts early, he manages to keep things under control. He has also recently gone on a gluten and dairy free diet to try and improve things. Have to wait and see how successful it is. Please don't struggle on with the symptoms. Best of luck

Bearcat Sat 25-Jun-11 17:34:21

DS became very anaemic at 19 (diagnosed at 18) as he was only taking asacol tablets and not being managed properly.
His new consultant put him on a high dose of steroids which were gradually reduced before he returned to university.
His asacol was also changed to pentasa as he said he could see his tablets, still whole in the toilet bowl. Apparently the coating on the pentasa means it starts to disolve more quickly higher in the gut, and he never had this problem again.
He has a good quality of life now, but sometimes uses asacol(I think) suppositories if things start to slide a bit and this seems to work for him.
I think that your medication probably needs tweeking. I know when DS was poorliest at the end of his first year at university DH and I were worrying if he would ever be really well again. He has had a good quality of life doing all the things young lads do.
Have you ever looked at the NACC website. There is on there a forum called IBD and me which is a forum for young people which can have some interesting threads.
Good luck to you, I'm sure on the right medicine for you things will improve.

OldBagWantsNewBag Sat 25-Jun-11 18:58:39

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SJisontheway Sun 26-Jun-11 00:11:03

For years he was told not to change his diet but his doctor has now suggested it is worth a try. Give it a month and see how it goes. Only 1 week in so far so we'll see how it goes. He hasn't had a bad relapse in ages but hasn't been quite right either. No bleeding at least. Will be interesting to see if it makes a difference.

Bearcat Sun 26-Jun-11 08:11:46

Regarding diet,my son in the last few months stopped eating cereal with milk for breakfast and started to have toast. He said it seemed to improve any UC symptoms not having milk every morning.
He was also having one of those little bottles of actimel a day which he also felt helped.

OldBagWantsNewBag Tue 28-Jun-11 12:27:16

Message withdrawn at poster's request.

craftynclothy Tue 28-Jun-11 12:42:27

Glad things are looking up.

Just wanted to add my mum has UC and finds milk really makes it bad. She has mostly cut it out of her diet. She also finds salad stuff makes hers worse too.

OldBagWantsNewBag Tue 28-Jun-11 13:05:52

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hungryallthetime Tue 28-Jun-11 21:48:22

Glad you finally got a diagnosis- at least you know what you are dealing with. I was diagnosed with UC last summer and was prescribed Pentasa suppositories and Mezavant xl tablets. I found that the suppositories work well to control the bleeding (have only had 1 minor flare up since last summer and started on the suppositories again and it was soon over with) and my consultant prescribed Mezavant xl to take every day which should hopefully reduce the frequency of flare ups and the severity. Have you been prescribed something else like this besides the suppositories? If not I would ask. From what I remember when I was first prescribed Mezavant and googling it, it has a good reputation but it needs to be this brand and not just generic mesalazine - but that may depend on individual circumstances. I then only use the supps when I'm having a flare up.

Regarding feeling drained, I would say that is normal when having a flare up - hope you are starting to feel a little better smile

OldBagWantsNewBag Tue 28-Jun-11 22:36:23

Message withdrawn at poster's request.

laineylou Thu 30-Jun-11 14:27:11

Hello - I have UC and yes it can make you feel rubbish! If you are having a flare the internal infection can make you feel exhausted. Try Spatone water to make sure your iron levels are OK - it's very easy on the stomach. I tried reducing dairy although my consultant doesn't think it's diet related - others suggest more radical dietary changes (which I'm considering v reluctantly as various meds haven't really done it for me)

OldBagWantsNewBag Thu 30-Jun-11 23:22:17

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mrsfollowill Thu 30-Jun-11 23:59:13

Hi old bag grin
Mr Followill has has UC for 20+ years. Dairy wheat and red meat aggravate it. It sounds like you are sorted with your meds for now but there is other stuff out there. He takes 'Colazide' (balsalazide?) and has been on azathioprine for 10yrs+. When he has a flare up (which touch wood, has not happened for 10 yrs) He was put on steriods.
Uc is a miserable, little understood condition but there is help out there. I heard of someone who did not want to take any drugs so basically 'juices' all their food. Apparentely pure Aloe vera juice is supposed to help but that didn't do Mr F any good! At his lowest point he only weighed 9 stone as everything went straight through him.
Once he could leave the bathroom (was in there 30/40 times per day!) he started lifting weights and generally has got fit and put lots of weight on (now 12.5 stone) and has a great six pack (at 40 grin) He still has the odd bad day but it's more like twice a month instead of every day.
Oh get your B12 and Folic acid levels tested- he cannot absorb these naturally so needs a b12 shot every 3 months and takes a folic acid supplement every day. The first symptom of being low on these was overwhelming tiredness and being very forgetful and clumsy.

Have to go but feel free to PM me - it helps to talk to others with the same problems. Take care smile

Eurostar Fri 01-Jul-11 00:08:56

Fatigue is a nasty side effect with most autoimmune conditions unfortunately.

shelscrape Fri 01-Jul-11 00:23:06

Many members of my family have UC/Crohns/IBS. We seem to be prone to autoimmune conditions for some reason. Anyhow, all the UC sufferers in my family have cut out wheat and dairy (milk and yoghurt in particular). Dr's all told them it was rubbish, but it seems to work. I think it just stops irritation and helps to prevent general flare ups. I just get IBS which I manage with diet too.

Glad you have got diagnosed and the meds are helping. The stress of wondering what the problem was would not have helped your condition either. Might be worthwhile trying rice milk or soya milk for a week and seeing if it helps.

laineylou Fri 01-Jul-11 11:23:17

Oldbag - Re suppositories etc....nah I'm way on past those now. Long n boring list of drug that didn't work. In a (just about) holding pattern with Tioguanine at the moment which apparently is an anti leukemia drug -hence seriously considering the whole diet change thing.

Awre Wed 13-Jul-11 11:35:47

Hi, I also have UC -was diagnosed whilst pregnant with my second child who is now 19months. Am finidng it really tough like you - I am trying to write up my PhD and it is hard to get in to my office in Uni. The chonic fatigue is a symptom. My consultant is very good so maybe I should go back to him before next appt and try to change the meds again!
It is really great to 'meet' people with the same condition as it does feel very lonely and my friends might realise that I am ill on a particular day but they are not aware it continues for months. Equally it feels very 'Me, Me, Me' if I bang on to them all the time about being unwell!

RunnerHasbeen Wed 13-Jul-11 15:03:09

I have had surgery for UC but remember it well. What I was told re: dairy was that it isn't causative in any way but should be avoided after diarrhoea. If you are currently having a flare up, the inflammation and rush of food through you harms most the top of the folds of your bowel, this is where lactose digesting enzymes like to live. You need to have a break from dairy while they effectively re-grow. Once you have it under control, it shouldn't do you any harm.

You will feel tired, fatigue is pretty much the main symptom, and common symptom, across autoimmune diseases. It isn't that your body is fighting UC, as such, but it is your immune response fighting against your lower bowel, thinking it is alien to you in some way. The only real difference is that you should not attempt to boost your immune system, as it is effectively over-active not run down. You feel run down, your body thinks you have some horrible bug, you are not sleeping or digesting properly, probably dehydrated. I really think it is important to treat yourself as well as possible, stay hydrated with salts as well as water and make sure you insist on treatment when you can't cope. Good luck.

LunaticFringe Thu 14-Jul-11 18:49:00

Message withdrawn at poster's request.

spiderlight Fri 30-Sep-11 22:10:47

Just hopping aboard because I was diagnosed with UC last week - currently on pred and Pentasa and iron for severe anaemia (had two transfusions last week). Interesting about B21 - I've got a family history of pernicious anaemia, so that's something to ask about when I next see the specialist.

Is there anything I can do about the yacky furry tongue that the steroids seem to have given me? I so desperately want to eat something and enjoy it, after weeks and weeks of hideous diarrhoea and nausea, but everything tastes luke-warm and horrible.

bozzylozzy Sat 01-Oct-11 08:48:13

i posted a couple of days ago, as doctors are currently querying crohn's or i have a grumbling appendix..
i just feel really down, because ive had IBS for years with diarrhoea/urgency, and since having my daughter 8mths ago all my symptoms have got worse. im constantly tired and dont feel "with it".
i was recently treated in hospital for 11days with IV steroids and antibiotics because the lower right side of my abdomen became very tender. i was also having severe stabbing pains in my upper abdomen too.

the docs have put me on a low residue diet - and my stools appear to be normal now. and the steroids are making me very hungry and keep having hot flushes and sweating loads

the docs have only done a ct scan so far. i just dont know what to do, as its getting me really down..

bozzylozzy Sat 01-Oct-11 08:50:22

i think my symptoms point to an IBD mainly - but just judging from my ct scan, they are leaning towards it being my appendix. but does a grumbling appendix present similar symptoms to an IBD???

spiderlight Sat 01-Oct-11 12:16:21

One more question - I've lost half a stone since coming home on Wednesday, despite pretty much lying on the sofa eating all week. Is this likely to just be poor absorption that will resolve as the steroids do their thing or do I need to call the unit? I've got no pain/diarrhoea/blood or anything and I'm gradually feeling better each day, but I'm also losing 2lb or so a day despite trying really hard to eat well. I suppose some of it is inactivity - need to build my leg muscles back up - but I wasn't expecting to lose weight on steroids!

Bozzylozzy, I hope they get to the bottom of things for you. Not knowing is horrible. When are you next seeing your doctor about it?

projectbabyweight Sat 01-Oct-11 18:43:25

Please consider going on the Specific Carbohydrate Diet, it "gave me my life back", as lots of these Amazon reviews also say:

https://www.amazon.co.uk/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_1?ie=UTF8&qid=1317490850&sr=8-1

Plus there's quite a lot on the internet about the SCD, and loads of recipes.

I felt better in a few days and recovered completely in a couple of weeks. The only times I've relapsed since (in 7 years) are when I've strayed quite far off the diet. Now I feel I ought to tell everyone else who is suffering.

There are worse things in the world than UC, but not many! God knows how anyone manages when they've got dc too.

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