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A bit of advice please...

Posted , 6 users are following.

melanie16925
melanie16925

Hi all,

Just as a bit of background - at the beginning of 2013 I started to get symptoms of UC - passing blood, loose and bloody stools, cramps, exhaustion etc with frequent and urgent toilet trips up to 10-15 times a day. I had these symptoms daily for around 8 months. I was referred to gastro at my local hospital by my GP. I was never given a diagnosis and never placed on any meds. My symptoms randomly stopped after the 8 months and, due to staffing issues at my local hospital I had a colonoscopy three months after this when I was not symptomatic. Other than 'some recent evidence of inflammation' as I was non symptomatic at the time of colonoscopy I was not diagnosed with anything although UC was suspected.

Anyway, then went about 1 year without any symptoms and I resumed eating properly (I was restricting when I was symptomatic) although my stools remained loose.

Cue Dec last year when my symptoms randomy returned. Back to frequent and urgent toilet trips, passing blood, clots, mucus, loose stools etc again just as last time. Back to GP (different one) who thought it may be internal hemmoroids - was given prednisolone suppositories for one week - made no difference at all to symptoms. I went back to GP who only then has referred me back to gastro as urgent - I think this may take about 3-4 weeks hopefully.

She did blood tests and I heard back from my GP yesterday and ,y red blood cell count is low. They recommended taking iron tablets - ferrous fumarate - which I started yesterday. I have felt sick and dizzy since but I think it's the iron tablets. However, I think they may have made me constipated. Trips to the toilet now are less frequent and only contain blood, mucous, clots etc and no stool. The GP told me there was nothing else they could do for me until I am further investigated by gastro - I just hope I'm still symptomatic then.

Anyway, I suppose I'm asking does this sound like any one else's experience of UC?

Should I continue taking the iron tablets? Will I get used to their side effects?

Is the constipation a bad thing? Are there any foods anyone can recommend to help bearing in mind I've been restricting foods again?

Is there anything else I can do?

Thanks for reading and considering any advice.

Thanks,

Mel

0 likes, 15 replies

15 Replies

  • limeleaf
    limeleaf melanie16925

    Posted

    It certainly sounds like UC.

    Even when the obvious symptoms: diarrhea, bleeding and mucus are remitting, the colon could still be inflamed and require ongoing treatment. If UC is diagnosed you are likely to put put on a regime of prednisolone and mesalazine to get symptoms under control and once they are, you will taper off the steriods but continue the mesalazine to control the inflammation.

    Iron supplements seem to cause disagreement amongst the medical community. They CAN cause constipation but equally, I was told by my gastro consultant not to take anything over the RDA as it would aggravate the diarrhea. You will have to stop taking the iron supplements sometime before your next colonoscopy as the constipation could make it more difficult to clear the colon before the procedure plus it can stain the colon tissue and obscure the view.

    Advice is to eat a low fibre diet for UC but then that can cause constipation. I wouldn't say that constipation is a good thing as you will end up straining and that's not good if there is inflammation there. Try to get some but not too much fibre. Visit the Crohns and Colitis UK website where there is lots of information.

    Tiredness is an ongoing symptom of UC as the inflammation in your colon means that nutrients (not just iron) are not being absorbed, nor are liquids. Dehydration is another symptom and that can make you tired and dizzy. Make sure you drink plenty of water. That should help with the constipation.

    I'm surprised not more was done for you in 2013. Let's hope this time around you can get a proper diagnosis and treatment.

    • melanie16925
      melanie16925 limeleaf

      Posted

      Thanks for the reply limeleaf,

      I just feel a bit silly posting in here as I don't have a UC diagnosis but someting is definitely not right I guess. Fingers crossed I'll get further with it this time.

      I'll take on board your comments about low fibre and I'll take a look at the website.

      I'm drinking heap's of water as I can feel I am dehydrated.

      I guess I'll just have to persevere with the iron tablets - I hadn't really thought about them and any colonoscopy prep but that makes sense. If it's anything like last time my first appt with gastro will be an assessment again and then back for amy procedure they think is required so I guess they will give me advice on this then.

      Thanks so much for the reply, apart from feeling physically rubbish I just feel a bit let down by the NHS since this all started (and I love the NHS usually) so it's good to know I'm not alone.

      Many thanks,

      Mel

    • limeleaf
      limeleaf melanie16925

      Posted

      Not silly at all. There is clearly something wrong and it needs to be sorted. You might consider keeping a diary of your symptoms so that when you do get to see the consultant, even if you aren't having obvious symptoms at the time he/she can see what you have had. Even if you drink lots of water, if the colon is very inflammed it just won't absorb enough and severe dehyradtion is potentially dangerous. Don't be afraid to go to A&E if things get bad as they can get some fluids into you by IV.
  • louisep
    louisep melanie16925

    Posted

    Hi Melanie

    You are certainly not alone in your experiences with the NHS unfortunately. I had a very similar story to you. In 2010 I went to my GP with bleeding, diahorrea etc and was put on a week of prednisolone tablets. They had no effect so I was referred for a colonoscopy. The diagnosis was proctitis, however I didn't get any further referral or treatment and I spontaneously went into remission. About a year later I started with another flare but although I was referred for another colonoscopy by the time they finally gave me my appointment, 4 months later I was in remission, having had no medication given to me at all. They took biopsies which came back negative and i was told I had IBS! It was only a further 2 years later when I yet again ended up having another colonoscopy whilst in a major flare up that I finally started to be treated. When I saw my consultant the first time she looked through my notes and informed me the biopsies were taken too high up so wouldn't have shown any deseased tissue! So finally after 4 years I am now on medication and being looked after very well. I've had a few issues finding suitable medication but I am now feeling well and tolerating azathioprine. I do wonder though why I wasn't taken seriously or given any help despite numerous trips to my Dr and 3 colonoscopies and wonder whether my condition may not have deteriorated as far as it now has? At times I actually felt like I was going mad and felt really let down. I thought people didn't believe me and I had no support from my employers without medical back up to prove my condition. I'm in a much better place now, and hope that my remission continues for a very long time.

    My advice to you is to really persist with making sure you get proper help from your Dr and consultant. Consipation can be another symptom of UC even though you still have to rush to the loo many times a day with blood and mucous etc. It can be even more difficult to cope with than diahorrea as you feel tender and uncomfortable from that as well as the UC pain.

    I really hope you get some proper support soon. I really feel for you with the situation that you're experiencing. Wishing you all the best for getting something sorted out very soon. X

  • Fluffe
    Fluffe melanie16925

    Posted

    Hi Melanie... it's not silly at all 'cause I have two diagnoses.  One that says I have UC and one that says it's a post infection because the actual report did not demonstrate UC or Chrons.  I was 'diagnosed' in August 2015 and when I was about to write my doctor for a referral to another hospital I finally got my second appointment after being given drugs that have had no real effect on managing it.  I have written the specialist in the hosptial laying out the series of events and with a little luck -- they won't manage to lose that like they lost the referral and the request by the private specialist prior to the appointment next week and will finally do something that will have an effect.  I have IBS and more than likely have had it most of my life - in the interim, the nurse explained all my problems away or that it wasn't their problem and I really felt phaffed off.  The Octassa caused weight gain, bloating - like I was ten months pregnant and skin rashes (which the rashes went away and the severe bloating when I stopped - yer I had to stop before I could see a private specialist for a second opinion).. the pentasa just kind of kept it even like a constant bandaid and the prednisolone foam that my GP put me on for a week - I had to stop when I bled heavily from 4 days use - peeing blood out of my rear.  It's now pretty much settlingfrom the 'blood' side of things but the only time it seemed to even out and become somewhat normal was about two weeks (after I passed out on a train!).. and my GP suspected an infection - and I was taking the pentasa at the same time)... then it resumed but now it's about at the food poisoning start of it all... yup.  How it started... heavy antibiotics from a severe infection and then food poisoning a couple of months later.  I also had a blood test on Monday that was normal (My GP was checking for anemia and what not). I stopped the Arcoxia I was given by the rhemuotologist - who saw me once on the referral from the GI clinic and then discharged me - apparently it's not supposed to be given to people who are bleeding and does cause the runs..  Won't know much until after or how the appointment goes this Thursday coming but so far the 'aftecare' I've received has been shocking.

    I hope they finally get to the root of your problems.  Yup.. low fibre is always good - (the dietician I saw at the hospital actually said high fibre!!!).  I also did gluten free oatmeal in the morning that seemed to not whoosh through me at the height of things.  I also stayed away from lactose - but even soya was bothering me back a while back....  And a diary is good... symptoms and even food... I never could tolerate onions (but love the beauties) and have only just started to slowly re-introduce them to see what happens!

    Although I'm new to the board too... this is a wonderful place with lots of great and friendly advice from some really lovely people :-)

    Val AKA Fluffe!

  • brooke22
    brooke22 melanie16925

    Posted

    Hi, UC is a very personal thing. It can vary so much from person to person. I have pancolitis (total colitis) but unlike a lot of UC sufferers I didn't suffer much from diarrhoea. I often get constipated and that's what causes the ulcers to bleed. When I first started with symptoms it was blood coating a normal stool and pain in my bowel but after a month or so I had urgent need to go to the toilet and just passed gas, mucous and blood. It wasn't pleasant!

    Constipation should deffo be avoiding! It will only scrape past the ulcers and aggregate it. But everyone is different! As for food, I just try get lots of fibre, spicy foods are a no for me as well as really greasy foods, mostly because it makes me constipated.

    You'll have to keep getting appointments and get it sorted!

    • limeleaf
      limeleaf brooke22

      Posted

      Isn't it interesting. My UC was diagnosed after I had very watery BMs with a lot of blood and mucus. The gastro doc explained that diarrhea occurs because inflammation stops the colon from doing its job of extracting water from the waste that goes into the colon via the stomach and small intestine. Waste enters as a soupy porridge and as it travels around the colon, water is extracted until, in the normal course of events, faeces come out the other end as a formed stool. This is the reason for dehydration in UC, water that should be absorbed into the bloodsteam, is,  instead, going right through and out the other end.

      I'm a lifelong vegetarian, live on fruit and vegetables, so my BMs have always been on the loose side. I've never had constipation. My doc is even suggesting that it's my lifelong high fibre diet that could have contributed to me getting UC although I think that's just his opinion (and no-one really knows do they?). I've not seen that written anywhere is any of the literature about UC. He insists I should eat a low fibre diet of potato, white rice, white bread etc and I detest it. I think it's way too carbohydrate rich and makes me feel sluggish which is the last thing one needs in addition to the general fatigue that seems to be part and parcel of UC and so I do add in some high fibre.

    • melanie16925
      melanie16925 limeleaf

      Posted

      Hi again limeleaf,

      As a lifelong veggie - experimenting with vegan be for all this kicked off - too, if I am diagnosed with UC or anything like it I would be interested in finding out more about what you find easy to eat. My usual diet of high fruit and veg, nuts seeds etc doesn't seem to be highly recommended from what I've read...last time and this I have found whire bread and bland soup the best to tolerate but, as you say, the thought of all those Carbs gives me the fear. But what would I be left with?

    • limeleaf
      limeleaf melanie16925

      Posted

      I think for now it would be wise to reduce or even stop your consumption of nuts and seeds as they could irritate your colon. Nuts certainly irritate mine. Soup at least gets some easily digested food, liquid and nutrients into your system. I have started to eat some eggs. I don't like it but I think it's important to get some protein for both energy and to help the healing process. That's not going to sit well with vegan principles so perhaps you may have to forgo that for a while. I enjoy eating beans and legumes and stopped that for a while on docs instructions but I've started eating them again and I don't feel they are aggravating my symptoms. I think everyone is different and it's a case of experimentation.
    • melanie16925
      melanie16925 limeleaf

      Posted

      Thanks limeleaf,

      I'm deffo staying as bland as I can just now with nothing that I think will irritate me but it's good to know I might be able to reintroduce the foods I like at some point. I'm aware I might have to forgo the Veganism for the sake of my health but meat, fish etc will always be a no no. I'll deffo be experimenting when I feel better.

      Thanks for help!

    • brooke22
      brooke22 limeleaf

      Posted

      It's interesting you've said that about vegetables and a long high fibre diet could have contributed in his opinion as I have never drank a sufficient amount of liquids since I was a child. I've always suffered from dehydration headaches, I can often go all day just drinking a sip of water. I had watery stools a bit before I was diagnosed but never as much as other people who describe going to the toilet 10-15 times a day which I can't understand from my experience. I always notice my stomach pain come when I am constipated and as does the blood, then I may get a bit of mucous and gas as the ulcers have been aggravated. It makes no sense right? Could be to do with the fact that my inflammation is worse at the tail end of my colon and it's just patchy throughout as I initially had proctitis.

      It's so interesting to here now the disease varies!

  • melanie16925
    melanie16925

    Posted

    Thanks louisep, fluffe and brooke22 for your replies! 😆

    All good advice and certainly makes me feel a lot less alone and a lot more sane!

    All I can do is live with it for now I guess and wait until I see gastro and push them to help me out in some way when they do. I just hope I still have symptoms - I get absolutely no warning that the symptoms will go away - just one day the trip to the toilet is not messy anymore - and they can give me some form of diagnosis.

    After 4 days on the iron tablets pretty much everything that comes out is now black. Even the blood I pass now that was a fresh red colour (the clots were always darker red) is darker. This makes me think the bleeding is coming from somewhere in my colon as opposed to a hemmoroid or polyp or something. Would you agree? I am deffo constipated with what little food I am eating - as you say louisep I am still having to go to the loo - albeit a little less frequently - just to pass blood etc with no stool. This is also making my cramping feel worse and I feel so bloated. Given how little I am eating I should feel so hungry but I actually consistently feel like I've eaten a 5 course meal! Bizarre.

    I guess I'll just have to wait and see what happens but thanks so much again guys! Hope you all stay well. Xx 😆

    • limeleaf
      limeleaf melanie16925

      Posted

      I was told by a doctor that when you take iron supplements, only a fraction is absorbed into the bloodstream and most is excreted hence the black stools. Taking iron with a glass of orange juice (Vit C) helps with absorbtion.  Avoid taking with milk, caffeine or antacids and best on an empty stomach. Iron supplements can cause stomach cramps too.

       

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