Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Soldato
- Joined
- 7 Feb 2004
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- 3,072
I had my colon removed in 2000 due to UC and have a jpouch, I need to constantly take a small maintenance dose of antibiotics, Metronidazole, to keep pouchitis from flaring up.
As well as UC I have Primary Sclerosing Cholangitis (Liver disease), these 2 diseases are heavily associated with approximately 75% of PSC patients having UC. It's a progressive disease and it has been slowly progressing since diagnosis about 8 years ago.
In the last few months it has become apparent due to my quality of life, scans and blood and liver function tests that the disease is now in a fairly advanced stage with steroids and antibiotics struggling to hold it off. I'm sat here with what looks like a golden tan and yellow eyeballs.
I saw my consultant yesterday and he said it looks like a Liver transplant is getting closer.
It annoys me a little when people say to me I don't know how you cope or I couldn't handle it. You don't have a choice, not coping is simply not an option.
Anyway I do as I'm sure everyone does in this thread, deal with it the best I can and try and get on with my life.
As well as UC I have Primary Sclerosing Cholangitis (Liver disease), these 2 diseases are heavily associated with approximately 75% of PSC patients having UC. It's a progressive disease and it has been slowly progressing since diagnosis about 8 years ago.
In the last few months it has become apparent due to my quality of life, scans and blood and liver function tests that the disease is now in a fairly advanced stage with steroids and antibiotics struggling to hold it off. I'm sat here with what looks like a golden tan and yellow eyeballs.
I saw my consultant yesterday and he said it looks like a Liver transplant is getting closer.
It annoys me a little when people say to me I don't know how you cope or I couldn't handle it. You don't have a choice, not coping is simply not an option.
Anyway I do as I'm sure everyone does in this thread, deal with it the best I can and try and get on with my life.
I have seen my Consultant today and we agreed to stop the azathioprine and continue with the Asacol tablets and pentasa suppositories. I have also been given some buscopan tablets to help with abdominal cramping/pain I have been getting the last few days. I was taking co-dydramol to help but told these are not great and should stick to paracetamol.
Has anyone else had bad abdominal cramping ? It seems to come and go with me. Sometimes it can be quite painfull. It feels like bad wind and does ease if I pass wind or go to the toilet. I have never had it before and it only started a few days back so could have been caused by the Co-Dydramol.
Has anyone else had bad abdominal cramping ? It seems to come and go with me. Sometimes it can be quite painfull. It feels like bad wind and does ease if I pass wind or go to the toilet. I have never had it before and it only started a few days back so could have been caused by the Co-Dydramol.
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I am keeping my fingers crossed it does the job as the other option I was given was autoimmune suppressant drugs, which I really do not want to take. I am remaining positive after seeing some improvement with Pentasa, hopefully this will do the trick.
I'll be over the moon if I can get back to a normal life style as its really depressing at times.
I'll be over the moon if I can get back to a normal life style as its really depressing at times.
I was advised it was a mild drug and only works on around 40% patients for maintenance. However, be it placebo effect or not I have seen a small but noticeable improvement in my symptoms. It’s also been the first time in a long time I’ve been able to drink milk as normally it would end in diarrhoea / stomach cramps quickly. I know the stuff not cheap though, as its a few hundred quid each time due to being private.
I've been very impressed with the new consultant (A Professor non the less) and he tells me about each drug and their pros and cons and also why he is using this method etc... As for me being of a technical background I can really relate to that. To me he seems be very on the ball and not just dismissed it as IBS and said there nothing we can do for you like the other two consultants (5 years apart) and is trying to help. He also comes highly recommend by a good friend who has first-hand dealing with him and the news is very positive.
I'm remaining positive he is able to help and get myself back on track, as for a while I've been a bit all over the place.
I've been on and off of it since I was diagnosed. If they've give you a course for a specific period then just follow that and make sure you stick to the tapering off. They work very quickly for me in getting things under control, the problem aside from the side effects is in getting off of them again without it flaring up again. My use has been basically 'take this when it flares up and come off it when things calm down' that's in addition to daily Asacol.
Side effects vary for me but mostly high appetite, acne once you're down to lower doses, feeling a bit hyperactive and trouble sleeping at times.
I am keeping my fingers crossed it does the job as the other option I was given was autoimmune suppressant drugs, which I really do not want to take. I am remaining positive after seeing some improvement with Pentasa, hopefully this will do the trick.
I'll be over the moon if I can get back to a normal life style as its really depressing at times.
I just try and watch what I eat and try to figure out what if anything irritates things. For me I just try and avoid too much dairy, some things like coffee or fruit with lots of seeds but as with everything it's different triggers for different people. Also for example if you need to take painkillers I've been advised to avoid NSAIDs such as Ibuprofen as these can trigger flares. Lactose intolerance is pretty common to go with Crohn's as I understand it which would explain the cramping etc you experience when drinking milk when not on the medication. If you want Milk and not flavourless alternatives I drink Lactofree which you can get in most supermarkets. It's basically Milk with the Lactase enzyme added to break down the Lactose.
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Yeah probably is quite good if you're in the group for whom it works and you've got a mild case... far fewer side effects to worry about as you're basically just taking a targeted anti inflammatory med.
Mine was thought to be a mild case too, fortunately I don't have many issues with the 'runs' so to speak... was only diagnosed through biopsies as the scope itself showed everything to be clear in my large intestine. Turned out, after an MRI, I've got it in the small bowel and it has definitely caused some damage there(will more likely than not need an operation at some point)... so while I don't get the runs I did (prior to making some dietary changes) get some days where I'd randomly have to go and vomit... and I still get plenty of days where I'm just in pain and need to sit with a hot water bottle on my abdomen.
Soldato
Yup, gives me wild mood swings & excessive sweating, the sweating was embarrassing but ide rather have that to deal with than the mood swings, thankfully no moon face tho.
Prednisolone, **** that drug. Had a terrible time on it. Moonface, big huge rash on my back. Was constantly hungry and the drug stopped any notion of being full.
Was at a hotel and had something like 8 or 9 slices of toast, only stopped because I knew it was wrong. I could have thrown another 10 down easily Thankfully got off it shortly after.
Was at a hotel and had something like 8 or 9 slices of toast, only stopped because I knew it was wrong. I could have thrown another 10 down easily
Thankfully got off it shortly after.
Soldato
Pred sent me almost insane! Couldn't sleep, constantly hyper, twitching, mood swings etc.. they tapered me off it pretty quickly which led to bouts of irrational fear etc. Horrible stuff, never again. My uncle has it for his shoulder and is fine with it.
Soldato
Scariest part was when I had to try really hard to stop myself from swerving into oncoming traffic on purpose
From memory there is pretty much every side effect you could think of listed for it. Some of that is obviously the medical companies just covering themselves but most of it is sadly real, truly horrible stuff to take for any length of time.
Pred made me a bit cranky but I went from full on bleed to just a small amount in the morning within a couple of days. I tapered off them for quite a while to be safe as coming off them can be hard....
There is a new steroid slow release tab out now that is for UC and it releases in the colon. It's hard to get as it's new but is meant to have less side effects....
There is a new steroid slow release tab out now that is for UC and it releases in the colon. It's hard to get as it's new but is meant to have less side effects....
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Doesn't you know the name?
My dad's been taken to hospital with stomach pains and lots of blood. He's been tested and has got C Diff so that's me out of visiting him.
The hospital have gone mental as he's been quarantined and has already been to the gp three times with all the symptoms. He shouldn't really be in hospital.
This is one type their are a few out now I believe...
http://xpil.medicines.org.uk/ViewPil.aspx?DocID=22330