I am constantly scared and worried. I was diagnosed with radiation enteritis in April but I am too scared to eat anything (other than soup or yoghurt) as I really cannot deal with another bowel obstruction.
I have 2 stomas (colostomy and an urostomy). The urostomy is fine but the colostomy does what it wants. My colostomy is very slow and there isn’t much poo in my stoma bag. I think it is constipation because with a bowel obstruction I get terrible pain.
I am too scared to contact the stoma nurses or A&E, as I am totally traumatised after having a NG tube shoved up my nose and then down my throat. I really can't deal with it.
I hope you all have a lovely day
Lisa x
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CrochetDancer
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I hear you CrochetDancer NG tubes are not fun at all!
I have a sort of checklist I go through with my colostomy:
• hydration - this can easily creep up on us and we’re more prone to dehydration particularly when it’s hot so make sure you’re drinking plenty.
• specific trigger foods - usually for me it’s too many nuts or a banana so will try and avoid having too many.
• heat pad or warm bath (maybe not great in summer) but heat can help to relax the bowel and get things moving.
• gentle massaging stomach in a clockwise motion can help get things moving
• try to keep moving around I know it’s really when your in discomfort but it does help, sometimes bending or squatting will help things start to move so I do this a few times to see if it helps.
•fresh orange juice or cola - if I can sense a blockage/partial blockage these will often help resolve it.
• if it happens a lot your GP might prescribe a laxative that you can take regularly to help avoid blockages.
I would say though if you haven’t had any output for more than 12 hours or you are vomiting it’s important to seek urgent medical advise.
Have you spoken to your stoma nurse whether you are a candidate for irrigation? It’s not for everyone as it takes some commitment but it might work for you and give you some control.
Apologies if this is all stuff you already know but it’s easy to forget (speaking from experience) when you’re uncomfortable with a potential blockage.
The late effects clinic said they couldn't help me.
They read my notes but the colorectal consultant didn't mention that he diagnosed me with radiation enteritis and he didn't mention about telling about going on TPN or a liquid diet. I got the feeling they think I have made it up! My CT scan notes mention I have PRD rather than a reoccurrence, which is great.
The world has gone mad!! Doctors and other health care professionals are seriously stressed and exhausted. They are missing things as I know to my cost. They seem to be just trouble shooting rather than supporting people emotionally, mentally and physically.
Glad the stoma suddenly went into action. Mood and food can affect our gut - so the calmer we can be and the better we follow good advice like Betty's the better we will function.
I am sure they do not think you are making it up - but they may be as distracted as many of the front line staff at present. Its ben a tough 18 months...
I did a mindfulness course several years ago and found it very helpful. Trying to focus on the positive rather than the negative aspects of things can be so good for our well being. Naso gastric tubes are enough to frighten anyone! So sorry you had to go through that experience.
Take good care f yourself and give yourself small treats when you feel things are going well and especially when you feel at the end of your tether!!
6 weeks ago I had an operation on both eyes. I have thyroid eye disease to add to my troubles. IV Steroids every week since February worked at first but then my vision began to deteriorate in the left eye. The op has made space at the back of my eyes for my swollen eye muscles. Result - optic nerves OK but now they have to correct my double vision. In hospital over night and double padded so I could see nothing . Nurses marvellous but explaining that to empty my bladder I need to stand up and hover was a challenge - and a bit embarrassing. Gut behaved itself thankfully and I was glad to come home after lunch a day later. Eyes still sore and watering and now on a drug to supress my immune system to try to stop me making antibodies to my own eye tissues.Thank you for asking! More info than you need I guess but the challenge of hospital and surgery with PRD is not to be under estimated. Most people have never heard of it! I saw it as an opportunity to spread the word!!
I really do feel for you. It sounds like you have and had a lot in your plate, on top of dealing with chronic PRD. It must be very distressing going through the op and I can well imagine the process was not necessarily smooth with tired NHS staff and sounds like things were missed. Eyes are precious. Glad you spread the word, guess some nurses even need to be educated in PRD symptoms. I hope the new drug works well to suppress your immune system. Best wishes
The staff at the eye hospital were amazing - very patient and kind. I had a good anaesthetic and the surgeons did an excellent job. It was scary to be without sight for 24 hours but glad I don't have to go back to have the second eye done! The problem was in getting a diagnosis last autumn when nobody saw what was happening to my eyes 'cos all the consultations were on the phone! Even when they did see me in January they still thought it was an allergy!
GP's are given very little training in eye problems I'm afraid. I was diagnosed with an over active thyroid 18 months ago. That is well under control and I am hopeful that the new drug will settle things down.
My PRD is a trial but being at home and in our garden is less trying than going out or on holiday and wondering where the next loo will be!!!
At least I can relax h ere.
Thanks for your concern. It is good to have this forum where we can "air and share"
love
Jude
PS if you have dry eyes (which oddly enough can itch and water a lot!) it is worth getting it checked out by a pharmacist or doctor. There are some good liquid tears on the market such as Hycosan red - which will alleviate the symptoms. Iam getting to be an eye expert theses days too !
Life can be a battle at times. We now have wonderful neighbours but have experienced the opposite in the past. You certainly don't need the hassle at present. My GP's thought I has an allergy and treated my swollen eyes with anti allergy eye drops and anti allergy medicines for 5 months. Then I got fed up and went to the local Eye hospital casualty. They diagnosed the problem the same day and sent me for an MRI scan.
I fear lots of people have suffered indirectly from the effects of the pandemic. I have an over active thyroid but that is under control. Not sure why thyroid antibodies attack eye tissue but I could have lost my sight!
My PRD gives me pain, bloating and diarrhoea / or constipation. I have trouble voiding urine but my small intestine is OK thankfully.
So sorry you have had such a difficult time. I hope things gradually improve for you
It was a good thing that you took matters into your own hands and webr to the eye clinic. It is funny/strange the thyroid antibodies attacked your eyes. I am worried now (no surprise there) my eyes are itchy. I do have fans on to drown out our neighbours. They have custody of their grandsons and have put a pool right outside my bedroom window. They don't play, they scream, shout and swear and it is excruciatingly loud. Their voices reverberate around our bungalow. We can't escape it anywhere. We can't have visitors and we certainly can't sit outside. My dad tried to speak to the grandparents but to no avail. She said they have been in lockdown (feeble excuse) and she doesn't reprimand them! We have contacted our local council (Cardiff) and they said they will help us.
The dietician checked my CT scan when I spoke to her last week and she read out the CT notes and it stated that I have pelvic radiation disease rather than a reoccurrence, which is fine. But the don't believe me about the consultant.
I have a colostomy and urostomy. I struggle with constipation and wind. I am on a low residue diet and eat slowly.
I hope yours isn't causing too much bother. It is annoying and worrying.
I am speaking to my GP on Thursday. I need to ask him to re-prescribe Ensure and I am going to ask for anti-depressants to help me cope with next door.
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