Hi am in a position of not knowing what to do I have ongoing anaemia which is probably being caused by the RA and am taking iron liquid every day my go wants me to have a colonostomy and am really worried having this done probably for no reason as I have no trouble in that region has anyone else had to make this decision because my thinking if I have that done and there is nothing wrong where do you go then? Hope to hear any comments. Thanks Annie

16 Replies

  • Ring your rheumatologist. I had an endoscopy done on account of my anaemia which was initiated by my gp. My rheumatologist was not best pleased: she said it was a waste of time as my RA was what was causing my anaemia and as I got 'better' so my anaemia would improve. However, the endoscopy revealed a hiatus hernia so I now take an extra omeprazole each day- so I'm not sure whether it was or was not worth doing ☺

  • Thanks for the reply I wonder was your hernia causing blood loss and after taking more omeprazol did the anaemia go away? Thank you so much for replying 😊

  • Hi- my hiatus hernia simply causes chest pain occasionally. Since taking the extra omeprazole it seems better. My anaemia is caused by My RA - the more inflamed I am the more anaemia I become. It's not too low though as my rheumatologist seems non-plussed by it ☺

  • They can generally tell if you have iron deficiency anemia or anemia caused by chronic disease. There can be some overlap too. Many RA meds cause iron def anemia and also can affect b12 and folate. I've had anemia for years and my docs would dearly love me to have an endoscopy & colonoscopy but I find the prospect terrifying and have no signs to support gastric blood loss so I have ducked it so far. I'm not suggesting you follow my example but have the haematologists had a really good look at your blood film? Size and colour of red blood cells can yield lots of useful info xx

  • Supplementing with copper, zinc and selenium often helps. Anemia caused by selenium deficiency in RA is not uncommon. Zinc and copper are important for normal iron metabolism these two trace elements are often low in chronic inflammation. You can find useful information on the net.😊

  • I've had a colonoscopy and it's really not so bad. You get given something to relax you and you don't feel a thing.

    I would go along and have it. There are lots of things that can cause anaemia, and it's best to rule them out. Particularly if you are still anaemic after supplements.

    They will tell you results on the day (UK).

  • I have inflammation of the colon that causes chronic diarrhoea. Hence anaemia. I was pleased to find out it wasn't something worse!!

  • You are brave and I might have it done in the end if nothing else shows up causing it I've meds 😊

  • You could just begin by taking a stool test. If no blood found and you have no GI symptoms find it hard to believe that colonoscopy necessary at this point of time. There are so many exams and test we are forced to take and that adds stress to our already stressful situation. If we can minimize the exams to the really necessary ones you also spare yourself. Here in France doctors especially specialists working in a hospital often send you to as many tests possible because the amount of money they recieve from the state is in proportion to how many tests taken. My first and last encounter with a prof. in AI diseases, before my diagnosis wanted to have me in for test for four days in the hospital and prescribed all possible exams and tests. I wasn't really feeling very ill at the time and after thinking about it called the hospital to cancel my stay, but it wasn't that easy. For a week they kept calling and pesturing me that I had to come, not because they worried about my condition but because I had said I would come. I made the hospital cancellation the next day. They were just eager to get someone to examin to their special ward that was quite empty of patients!

  • Hi thanks for your reply have had two stool test and all ok no blood loss so looking at all the helpful replies I have had I am going to ask for more detailed blood tests and give the colonostomy a miss Thanks again 😊

  • I was in your position when my RA was not controlled. I agreed to go along to the anaemia clinic, my plan being to ask questions about anaemia and inflammation from the experts, I found it hard to understand myself. To be quite honest it was just a form filling clinic for an endoscopy, I asked about inflammation and anaemia and the nurse just shrugged and said " oh yes I've heard that too!" And carried on with the form filling..... I wasn't impressed. Luckily for me, my hb levels had just jumped into the normal range on my previous blood test. I figured if there was any bleeding going on then it wouldn't improve but get worse, so I politely refused the endoscopy or anything else and went on my way.

    My levels are ok now my RA is controlled.

    ( I was on iron for a year, but wanted to know if it was worth taking if it happens again......I didn't get any answers)

    Good luck with whatever you decide to do.

  • Hi thanks for your reply it was very helpful I think I am going to ask for more blood tests and avoid colonostomy test especially as doc said small chance of bowel tear. I hope everything is going along ok with you now. Thanks again 😊

  • Hi

    Before I was diagnosed with RA I noticed my iron levels were going down. I have another condition whereby I need blood tests annually and in one year my heamoglobin dropped from 139 to 119. Still within normal levels and 4 months later it had dropped to 112 which was below normal levels.

    Since diagnosis and treatment commenced my levels are within normal levels.

    From what I have read untreated or uncontrolled RA cause anaemia due to inflammation and synovitis.

    I have had a colonoscopy in the past it's a little uncomfortable but I was given sedation.

    Hope this is helpful and hope your anaemia is sorted soon.

  • I think it depends on which type of anaemia you have, I have Pernicous and have injections 3 monthly. Loads more energy and so do ask why they are testing you in my case it was the RA consultant who found the PE which I'll be forever grateful. I've had embolisms and my blood is affected by the RA so any tests your offered I'd go for.

  • I was going offered an endoscopy and colonoscopy when I was feeling very il prior to being diagnosed with sero negative inflammatory disease. I accepted both tests, but waiting for them was hugely stressful and I didn't know how I would get through the experience. Actually, both tests were completely manageable. The medics were lovely, understood my anxiety. I don't remember the endoscopy at all, but I woke for the colonoscopy, felt no discomfort and was really relaxed and interested to watch what was going on on the screen. I was amazed I'd lived in this body for so long and had never seen that aspect of myself. Staff were kind and explained everything. Such a relief to have it over and done with. Polyps were removed during the colonoscopy, which will be repeated in a couple of years. I won't be do distressed next time in the anticipation of it. So, I would say, if you do decide to go ahead, I am sure you'll find all the anxiety beforehand is the worst bit. And the relief that came afterwArds was iamazing. Hope this helps. In my case, the tests were able to rule out illnesses being considered as responsible for my weight loss and inflammation and discomfort. The inflammatory arthritis diagnosis came some months afterwards.

  • Thank you so much for your reply and if they keep pressing for me to having it done I won't be so worried I think probably with me it is the preparation before having it done worried me the most but hopefully I will have more in depth blood tests done to see if it is the meds causing it well thanks again and take care 😊

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