Leg Ulcer Treatment Advice Needed?

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Hi 

I was wondering if anyone could offer any advice or suggestions. 

I am 36 years old female and have suffered from a non healing venous leg ulcer for just over 5 years now and have attended leg ulcer clinic twice a week ever since.  It started as a small scratch on the front of my left leg after hurting it on a bike pedal.  I seen to have had a bad reaction to everything which has touched my leg including double base with exception of the inadine dressings.

I have been previously treated using the 2 layer and 4 layer compression bandaging and inadine dressings, which was changed on 8th November 2013 to Juxta Cure Compression Wrap (which I personally prefer) by the Vascular Nurse along with Alginate Dressings and ended in my leg being infected for 5 months as nurses kept saying my leg didnt look clinically infected and refused to swab it, this resulted in me being unable to stand or walk for 8 months (can stand and walk for about an hour now but still in some pain) due to the burning and stinging and the amount of pain I was in.

Over the last 3 months I have been back on the inadine dressings, infection free and finally seen a little improvement each week.  Last tuesday (5th Aug 2014) I attended the ulcer clinic as normal but seen another nurse which was covering staff holidays and who hasnt been back in clinic since decided I didnt need the inadine dressings and prescribed Prontosan Gel (I am already using Prontosan Would Irritation Solution).

At the time I explained my concern to changing from Inadine dressings to the prontosan gel as I have previously had a bad reaction to nearly everything else that they have tried including the Inadine powder (cant remember exact name off top of my head sorry) which I was assured I wouldnt have a reaction to as I was ok with Inadine dressings.  I was reasured that I wouldnt have a reaction and it would be ok.  

The prontosan gel has been on my leg 7 days (changed on Tuesdays and Fridays) and my ulcer is already shown signs of infection (waiting on swab results), however they still insisted on keeping me on the gel yestarday and my concerns were once again brushed under the table. The ulcer itself was looking quite healthy and better than it had ever been while on the inadine dressings, yestarday it looks darker than its been for the last few weeks, and the area around the ulcer is now white and looks thicker (not sure if this has an exact name).   

I was under a new consultant at the hospital who booked me in for a deep vain scan which came back clear (I had waited for the scan for 4 months before finding out the old consultant hadnt even booked it).  He was happy for me to continue with the compression and discharged me.  The nurses have tried to referred me back to the hospital consultant again but there has been no follow up from my GP surgery on this and no one can tell me why just that they will look into it. 

I am not sure what to do next. I have tried raise my concerns regarding my treatment etc with both the district nursing team at the clinc and my GP but dont seem to get anywhere.

Also I am worred that having my leg washed in a plastic bucket filled with tap water wont be helping my leg, sometimes when my ulcer has been bleeding they water obviously becomes discoloured due to the blood and the nurses use this same water to wash my leg including the ulcer.  Both hands although they do use gloves are in the water then touching my leg, the clean swabs, cream etc, doesnt that spread infections especially if when my leg is already infected?  

I have got to the point now I just dont know what to do, not only is it affecting myself but also my husband with having to take time off work to look after our 4 children doing school runs etc.

Sorry my post is so long and thank you for taking the time to read it, I would really appreciate any advice or to hear from anyone else in who has been through the same thing.  

Thanks 

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  • Posted

    Hi TT

    5 years is a long time to suffer this condition. i have had a venous ulcer on my right ankle for a year now following a small knock on a table so i know a bit about what you are going through. it is a battle to find suitable dessings but i have found advancis manuka dressings as an excellent way of keeping away infection which has helped the healing. it also doesnt hurt as much as inadine! i am only 47 with young family and busy job so lifestyle to allow time to put my foot up as much as i should and i actually just change the dressing myself as i dont have time to see a nurse twice a week, but it is improving with the manuka so worth a shot.  

    thanks 

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    • Posted

      Hi thanks for your reply.

       I have tried the advancis manuka  unfortunatly I had a bad reaction to it, like everything else.  I dont have any pain, stinging or anything from the inadine dressings, the pain is just below the ulcer at my ankle and inside of my left leg.    

      I hope your ulcer continues to improve and hopefully fully heals quickly. 

      Thanks

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  • Posted

    Hi Twinkle toes,

                            I had the same problem. Ive had a leg ulcear for over 12yrs now. the nurses said all they could do for me was dress it with 3layer compression and see how things go. They tried everything from inadine to prontosan gel. Nothing was working eventally they tried ICHTHOPASTE (white visapaste) which heal it completely. Then i ended up with a dvt and its come back with revenge. Now they are going though everything again. Hope your leg gets better

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    • Posted

      Hi thanks for your reply.

      I have tried everything, including Ichthopaste which again I was allegic to, I have a A4 sheet of paper in front of my notes which is covered from top to bottom and back to front with lists of things i cant use.  Im back on inadine dressings again which seem to help very slowly but does work for me and the more layers of inadine dressings on at the same time the better, although due to costs some nurses are reluctant to put more than 2 dressings (1 layer) on at one time. 

      I hope you have better luck than me and you find something soon that works for you and heals it once and for all.  

      Thanks x 

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  • Posted

    Thank you for your replies.  

    I am now back on inadine dressings again and have another infection which I told the nurse would happen.  The pain is still there and im still taking, paracetomol, iburophen and dihydrocodeine aswell as the antibiotics, but they dont seem to have much effect unless i have my leg in the air constantly. 

    After asking about a doppler as I havent had one for nearly a year now (only had 4 dopplers in last 5 yrs), to be told I should be having them done every 3 months, so I am now booked in next month (october 2014).  

    Most of the nurses are still not trained or seen the Juxta Cures Compression Wrap (which I have been on for nearly a year now instead of the bandages) and dont know how it works, so I have to show them even through I am not trained and not medically qualified.

    There has also been a couple of isses hygeine, with a nurse last week when the nurse was putting on her gloves on and she dropped on the floor, picked it up, put it on and was about to touch my leg, until i pointed out  it being on the floor.   There was also a incident a couple of months ago where a different nurse dropped a inadine dressing on the floor after taking it out the sealed packet and picked it up and was about to put it on my ulcer until i pointed out it had been on floor and was no longer sterile.  This shouldnt be happening and as a trained nurse this is basic practice as well as common sence.

    Tbh I just feel like I am being passed from one pillar to another and back again and not getting anywhere.  

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  • Posted

    Hi Twinkle Toes,

    I would like to particularly draw the attention of those who are suffering from long-time persistent skin problems, such as wounds. Over the years I suggested the Arquebuse Water with 75 herbs to countless of friends, whose families had these kind of problems. In many cases the wounds recovered fully, epithelization occurred. It was simply indescribable the gratitude what I got. The most recent case, I suggested to my dermatologist friend to buy the Arquebuse Water with 75 herbs to her husband who had an ulcerated hole in the sole. For several years he had an unhealed wound about 2 cm deep and 5 cm in diameter. My friend works as a dermatologist in a clinic in Budapest, but she could not help her husband. She started to use the herbal essence. The full epithelization took four full months. Dermatologist colleagues came over from other institutes to look at the incredible results. My dermatologist friend happily called the Swiss producer and reported the miracle that happened to her husband. It was a beautiful day for everyone!

    Hope your legs get better !

     

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    • Posted

      Dear Frances

      Since your recommendation, I have bought some Arquebuse Water with 75 herbs. I was wondering when you spray it on the ulcer does it sting? Also, do you apply a bandage? if so, what is the dressing that you use?

      Regards

      Sandra

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  • Posted

    I just wanted to reach out to you Twinkle Toes. I am heading for my  fourth year of exceedingly painful ulcers on my lower legs - which I am sure many of the so called "entirely neutral gentle products" would "work wonders" some of whom (particularly the Manuka Honey) burnt my skin so badly you could trace where the edge had sat on my open skin for months after.

    Currently I am doing Lymphoedema treatment with help from Tissue Viablity & they have begun bleeding bright red good blood - but do you think anyone can advise me if this is good or right ?? Please feel free to be in touch - I have been thinking painful ulcer sufferers should get together on FB or the like.

    I am interested in knowing more about the pain others are suffering with their leg ulcers because I simply cannot cope with the pain any longer, it is beyond tolerable!!

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    • Posted

      Thank you for your message. 

      Sorry to hear you are also suffering from Painful Ulcers.  I know only too well how you must be feeling after spending the last year in complete agony and unable to walk or stand due to the pain. 

      As for bleeding bright red blood, I have had this alot over the last 5 years and always been told that it is normal, but please check with your own nursing team or consultant as I have found from experience each person will tell me something different.

      I have been thinking the same regarding the facebook page and was thinking of maybe setting up a page we can all have a chat, moan/rant and hopefully offer some help to others in the same situation.

      Dont be afraid to keep pestering your doctor for pain relief until you find something that works for you.  I have been on Paracetomol and Iburopen for over a year (every day) now and have tried all varieties or codein and have just finished a course of Oramorph (oral morphine) which was brilliant for me took pain away almost straight away. Unfortunely I cannot have Tramodol, but I have heard it can also be good for pain if you can take it.  But please do see your doctor even if it means going back or phoning every day.  

      Please keep me updated on your progress and hope your pain eases very soon.  

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  • Posted

    UPDATE -  Dec 2014

    Just a quick update.  

    I am now under a new hospital, consultant and vascular nursing team.  I have had a Vein Scan and Artery Scan yestarday.  Although I still have to wait for the official results in a couple of weeks, they have found a problem with one of my smaller veins which isnt working properly. The long term plan is to treat my ulcer inside out and the results confirm the operation will probably now go ahead one way or another, which to be honest I expected anyway. 

    On the plus size my smaller ulcer has nearly healed (first time shown any improvement) and my larger (original) ulcer has halfed in size and improving since I was put back in the 2 layer compression bandages 4 weeks ago.   

    I now have to wait for another appointment at hospital again and take it from there.  Hopefully now I will finally get somewhere.  

    Thank you to everyone who has replied to my post, it really does mean alot to hear from others who are suffering from ulcers or knows someone who has.

     

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    • Posted

      Hi, am new at using this site. I've read some of the pain you guys are going thorough

      I hope you get well soon.

      I was just looking on leg ulcers to get information, as I have been suffering from this pain since end of July 2016. I haven't had any joy from my GPS

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  • Posted

    Hi I am new here but I was interested in your comments as my husband is going through a similar situation.

    Due to being an auxiliary nurse (retired) the surgery has left the dressing if the wound to me. My husband's leg started due to a blister as he suffers with cellulitis and is taking 80g diuretic tablets per day. The Dr in his wisdom tore the skin off the blister thus leaving an open wound. This was 4 weeks ago and he is now in considerable pain and taking double dosage of antibiotics (500 gms) .

    The wound seems to be getting bigger and I was instructed to change dressings twice a day cleansing with water and given an antibiotic cream. This seems to make the wound stinging so now leaving off the cream to see if this helps. He is due to have doppler test in a couple of days. I suggested to the practice nurse that maybe compression would be an advantage so we will see. Hope you're improving now. Regards

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  • Posted

    Hello to yo ALL, I'm sorry to hear alot of you are still suffering with leg ulcers.  I've had mine 2 and 1/2 years now.  I go too my local health centre three times a week to have them dressed.  One of my legs are almost healed but the other leg has a huge big ulcer on it.

    The nurses use Cutimed on them which is a sort of green clothy square they put over the wound, then they put a pad on over the top of it, then wrap two K Soft's , followed by I think it's a 2 wrap compression.  The nurses have just ordered my some gel (apparently it costs £8 a bottle) but it works very well on my bad leg.  My trouble is that I have Pseudemons infection that sits on the top of my skin and won't go.  Pain wise I am on Zomorroph (Morphine capsules) plus Zapain.  That keeps most of the pain at bay although I do get quite a few twinges.

    Anyway good luck to you all.

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  • Posted

    I was so sad to read your report. I am 71 and struggling and cannnot start to image how you must be feeling with young children to look after. I have had my ulcer ( on the left side of my ankle)for 6 months and last week, after a few days of severe pain, developed another one just at the back of my heal. I am really fed up so feel for you so much.Hope to goodness they help you soon with the right treatment. There are so many trials going on around the world that you would think by now they would come up with a cure!. x
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