Leg ulcer

[Loramay]

I have had leg ulcer s now for the last 5 months. The problem is that I don't fit into there usual leg ulcer patient

1 I have a latex allergy which has manifest into I get sensitive reactions to most of their products they use. I can only use non sterile pads. So far only zipzoc seems to be working. They put a new one on last Wednesday which was brilliant but by 3am I am ripping it off my leg which now has angry red welts on. Only to be told on Thursday that it wasn't an allergic reaction anymore as it was some hours later and I had removed the dressing and washed my leg even though my leg was still bright red and very sore and it had stopped being an allergic reaction when I had removed the dressings and washed the leg

2. I tried compression bandages but after sitting in lymphatic fluid eating away at my skin for 4 days I couldn't take any more and took it off. I have now refused to consider this again as I am still leaking fluid. My lymphoedema nurse agreed with this

3. My lymphoedema nurse has recommended easy wraps which I have a calf and foot. She put it on and showed me what to do. After 24 hours after starting it I took it off to change my dressings only to find that my ulcers had grown. My lymphoedema nurse told me to remove it. I am still going to have easy wraps but try to increase the amount of compression gradually both time wise and compression wise.

I have tried the Wales Pathway but I had to do it on my own as they didn't agree with it.

I have also found out a lot of information on Internet because I think that they are treating my ulcers as venous ulcer not a lymphatic ulcer.

We went and saw our GP on Thursday and he changed some of my pain medication and gave me a sleeping pills as I also have osteoarthritis and osteoporosis and the outcome is that my husband and I have to go to a meeting with the head practice nurse and the nurse I get on with. I have been told that I either have compression bandages, compression wraps which I am willing to use or they will manage it but it will probably never heal.

I am currently trying bed rest with my bed raised by 7 inches and then I have a shaped pillow which raises it another 2 /3 inches. I am unable to moisturise it as I am reacting to all the different emollients.

Does anyone have any more ideas as I am running out of them. I also have gads and some times the pain I am getting from my ulcers have taken me very close to having had enough and ending it which my GP and one of the nurses know about.

[Lynora]

Have you had cellulitis in the area where the 'ulcer' has appeared? Does the lymphoedema nurse think it is maceration around an area of lymphorrhea, rather than a venous ulcer? How often are the dressings being replaced?

[Loramay in reply to Lynora]

Yes I have had cellulitis around that area twice and I am currently on antibiotics for 3 weeks then I am going to have penicillin for life. The lymphoedema nurse only peeped under my dressings and that was over 3 weeks ago I am having my dressing changed 3 times a week at the surgery plus I change them daily plus I wash them daily. This is the first time the nurses have treated someone with lymphoedema who is leaking Lymphorrhoea.

I have slipped through the net so to speak I was given some sigvaris wraps 3 years ago and promptly discharged it wasn't until I found this site and lymphoedema support network that I knew anything more and the first time I visited the lymphoedema clinic I had cellulitis but didn't know as I am disabled and on fentanyl and oramorph. I also dress it with clean dressings etc before I go as it is less painful because for some reason the ulcers are very painful and my pain relief doesn't work on it. I have just had a shower then I cleaned the ulcers but just the touch of the water was so painful I got stuck in the shower and ended up waiting an hour for my son to come home to get my leg out of the water. I use a plastic trug.

I really don't know where to go from here I am getting my information from the Internet and last night found out that lymphoedema ulcers are different from venous ulcer. The practice nurses say that it hasn't maceration yet but it is very close and they are concerned that it will in one of my bracelets from my lipoedema by the heel and ankle. Currently the ulcers cover 3/4 of my calf

[Lynora in reply to Loramay]

Do you also have rheumatoid arthritis?

[Loramay in reply to Lynora]

No but give them a chance, so far they have found out that I have a different disorder every year for the last 5 years lymphoedema lipoedema osteoporosis angioedema I can't remember the last one but that's to go with osteoarthritis due to a motorbike accident 35 years ago, generalised anxiety disorder, depression, hihaitus hernia, ibs, latex allergy, asthma.

I have just started to change my dressing as the one they put on at 5 o'clock is soaking wet and my trousers were glued to my ulcers at the back where they hadn't covered it with any dressing or pads. I didn't realise until I was pulling them down. To say that it's now very painful is an understatement. But my skin although purple hasn't broken down. I have just removed the pads to find they had been put on back to front and no dressing on the back of my calf where the rest of the ulcers are

[Keeping in reply to Loramay]

Hello I had several bouts of cell which led to huge open wounds on my lower legs. I sympathise with all the worsening you suffered each time someone tried to help with well meaning intent as I found that too. Horrifying to take off a dressing a care pro has put on to find its causes more damage. And yes the pain is shocking . Only by trial and error and slow pain staking diligent self care many times each day for months did I heal myself. I can’t guarantee it will work for you, But here is my regime each time I get a wound to Assist quickest healing and minimise lymphorrea damage. Just in case any of the info gives you any insight into what might suit you

When showering I wear the type of plastic guards that would keep a cast dry to avoid any shower water touching site. So you can clean the rest of you

Only use emoilant on in tact skin surrounding the area. But far enough from the edges of your wound so you can stick dressing successfully

Clean the site with sterile water from a spray bottle and only pat dry with a clean fresh towel each time. Obvs very very gently or air dry if too painful to touch

I use a three layer application as a dressing. Painstakingly cut to size to fit wound, which will hopefully decrease in size marginally every few days. You might find you need more than one packet of the first two layers to put on as a jigsaw puzzle then completely cover with an outer dressing big enough

Once site is dry after cleaning, I apply and leave on a gauze impregnated with iodine. The one I found was called inodine. If you should be lucky enough to find the wound dries out and shrinks a little the gauze May stick, so a light spray of water should loosen when removing

On top of that I apply a non adhesive one way absorbent dressing. This has a one way clear film which allows the leaking exudate to be absorbed into the dressing but not let it sit on the skin.

Needs to be checked constantly, as once this is soaked it’s got to come off. I would never leave longer than a day even once healing is evident, but you might need to change several times a day to remove the exudate and keep dry.

The kind I use are called melolin.

Over both of those layers I use a mepore breathable dressing big enough to cover it all with room around the edge of your would so the self adhesive edges don’t touch the broken skin

You might need to adjust to suit you, but I personally could not afford to trust anyone else to apply their own stuff, never made any progress, and mostly made it worse. I do wish you luck x

[SmallBlueThing in reply to Keeping]

Good stuff, but with a caution about Inadine iodine dressings, if one has a thyroid condition.

I'm taking lauricidin pellets (antibacterial and antiviral) after having to be on antibiotics for three months last year, and my legs are now at a normal temperature for the first time in over 15 years. There are also lauricidin-containing ointments and sprays (e.g. Epi-Shield and Skin Defense), but they don't appear to be available in the UK.

Best wishes to you, Loramay .

[KentLymphatics]

Sorry you are going through a lot Like Lynora says cellulitis and bandage frequency needs to be looked at. If the ulcers are not managed they will indeed get worse.? Are you Diabetic.?

Ask your nurse to consider Paste Bandages with Multi Layer compression Therapy changed daily for a week then reduce every other day on week 2-3 and review. The paste bandage does not need to be changed daily. Consider having Reps in Juzo does Cotton garment with 💯 % contact against skin also look at Sigvaris as well... Avoid using the liner from the Easy Wraps but use the Tubifast or similar instead. Good luck ☘️