some may remember I fell from my disability stair lift in July and landed on my head at the bottom from the top of the stairs. Knocked myself out, had brain bleed, concussion and a fractured right temporal bone. Came out of hospital unable to walk. I have taught myself to walk all be it wobbly. I have had digestive problems since it happened. I didn’t eat in hospital for close to 30 days. My bowel was damaged in that old scar tissue was jolted very hard. Instead of this scar tissue blending in with the tissue around it some had dried out creating gaps. I hadn’t had serious digestive problems before the fall and had sent my bowel test kit back and it was clear. Since being in hospital I can’t eat a full meal as I feel too full. I am going to the loo fine. No diarrhoea or constipation. No blood in my poo. I have been going for a wee a lot since they took a catheter out in hospital. I am going for a wee every hour and often don’t make it on time. I went to see my GP the other day about the feeling of being full and discomfort after eating and problems swallowing the food. I explained that I had lost a stone in weight since before I went into hospital and when I came out. He examined my tummy and I had pain in the right bottom corner (right where my pelvic bone had been sore for years) and in the right upper area near the rib cage (I have costochondritis and am often in pain in the bones). When I sat down he told me he was making an urgent referral to a bowel consultant and I should hear in 2-4 weeks. If I don’t hear I have to phone the GP as “this is urgent”. My hair is also falling out. The next day I had a phone call saying I need to go on Friday of this week to have a endoscopy of my throat.
since all this has happened I have thought of the obvious worse case scenario and it is driving me mad! I have been in floods of tears and thinking of what I need to do in preparation with my affairs. I didn’t have time to explain to the doctor that the weight loss was due to not being able to eat in hospital. I have put on 6 lb since coming out of hospital. A friend has a friend who is a retired consultant (not sure in which field) and she had similar “symptoms” but with diarrhoea and sickness. She thought she was doomed but ended up being diagnosed with diverticulitis. I am getting myself into such a lather I feel as if I am shaking all over inside and I understand that this is stress but can’t seem to calm it down. Just wanted to get this off my chest. Thanks and sorry for the moan.
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Bowenlady
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Oh lovely, you have been through such a dreadful time, it is no wonder that you feel such trepidation. Anyone in your position would. Your GP. Is being prudent by sending you urgently.
It is no good saying try not to worry because of course you will and nothing anyone can say will make that easier but I send you lots of love and good wishes for Friday. This is a safe space to vent and express feelings we cannot do anywhere else so you let it all out xxx
Thank you. On top of this I weighed last week and my weight had gradually gone up by 6lb. I weighed this morning and I’ve lost 5lb! Perhaps not weighing may be a good idea! Thank you for saying it’s okay for me to vent here. The other thing I need to discuss with the endoscopy people is bleeding. The leaflet says that if they need to take a little biopsy when the tube is in my throat stomach or duodenum they will. When I had a liver biopsy when I had my gallbladder out it took them 4 hours to stop the bleeding changing the op from 2 hours to 6! Also they say I can have sedation to make it easier to do but they talk about putting it through a vein in my hand. My husband says it took 6 attempts for someone to be able to get the cannula in when I went in this last time, because my veins bend. I was screaming in pain during the gallbladder op! Hey ho don’t know how much lupus is interfering with all this. Thanks again for your kindness.
I don’t know if this helps but I have had four endoscopies and had biopsies each time and never had much in the way of bleeding. I have never had sedation just the throat spray and I have been glad to be able to leave quite soon afterwards. It is an uncomfortable experience always but it can be over quite quickly which is a blessing. I think organs such as the liver do tend to bleed more so try not to worry, you will have a questionnaire beforehand and an opportunity to ask any questions and express any fears. You can tell them your history so that the6 can be aware of the issues you have had previously xxx
You have such a lot going on it’s normal to feel the way you are. My last two endoscopes were the easiest procedures I’ve had. I’m the biggest scaredy cat ever with the worst veins out there. They sprayed my throat as well as having sedation, I was out instantly, don’t remember a thing. Cannula went in on the second go. Had biopsies done as well and everything went well. If you are finding food difficult you should ask your doctor to refer you to a dietician and she would prescribe those Ensure drinks, at least they will give you the vitamins and calories that you need and help you stop losing weight. The hospital should have given you similar. Just hope the time goes in quickly for you and get this test over with quickly. Take care 🤗
We are all thinking and rooting for you. If it helps, I know someone with diverticulitis and although you must keep a close eye on it, it is possible to treat. I'm glad at least your are getting urgent attention. Perhaps the most important thing for healing is to try and calm the stress (easier said than done, I know, but your docs might be able to prescribe something temporarily) xx
I hope Friday comes quickly, so that the endoscopy is over and done with. The GP may have done this as an urgent referral only so that you get seen quickly, it seems to be the way it works these days. I have had an endoscopy to test for coeliac, not the best but neither the worst I’ve had done. I didn’t have sedation so I didn’t have to hang around after like you would with sedation. You just have to remember to breath through your nose and stay calm, the nurse was lovely holding my hand the whole time talking to me.
If you can’t have a moan /vent/ talk about your worries here, where can you with people that understand how you’re feeling. We have enough to put up with as it is and sometimes putting it on here is just what we need.
Sending my good wishes and support to you too. You have been through so much lately and have done so well. I think you have been amazing! You can do this next challenge too. You are stronger than you think, because you have proved this already. Not weighing yourself is a good idea. Try to find some nice things to do that distracts you until Friday. Remember we are all with you. x
It’s scary, and it’d not be normal not to be worried but getting fast tracked so that any diagnosis and/or treatment is fast tracked is for the best. I’ve had this happen to me too and can well remember the stress.
As for the endoscopy: I’ve had two. Not at all pleasant, but the nursing staff are hugely supportive. I tried sedation the first time but didn’t feel at all sedated so I tried the throat spray the second time, which was easier because I wasn’t internally grumbling that they’d forgotten the sedation!
I don’t know how much information they’ve managed to give you but I’ve found in the past that it’s possible to call and ask what the procedure involves. It can make it easier to know what to expect.
Oh my love, what a terrible time you are having. There's no wonder you are stressed and worried. The waiting is awful, hope Friday comes quickly for you. It's good you've posted on here , so you can get support. And think how far you've come, to get yourself walking again after you fall is amazing, you have strength x
please try not to worry, I know it’s hard not to. My heart goes out to you, I too have gone through a bit of a drama like you, not to the level you are going through but none the less it’s still a huge worry. Why did you not eat in hospital, did no one query this ? Try to eat a bit more each time you have a meal, if you can’t eat all of it wait a while and have a snack, keep doing this and you will be able to eat more as time goes on.
In the hospital they were quite brutal about my eating saying I was deliberately not eating. They were making a physical note of everything I did eat. The food in the hospital looked disgusting and was very poorly presented on the plate. Every time I went to eat I felt sick. When I did eat a small amount I felt as if I was going to vomit. Eventually my husband brought me in a Big Mac, believe it or not, to try to tempt me. I ate some of it the first time and he continued to bring me things he knew I liked. A bacon sandwich, crumpets, and other cooked meals. One nurse told me “the only way you will get out of this hospital is if you drink, eat and move”. So I started on fluids making sure they could see I was drinking (although I had to ask them for fluids as I couldn’t sit up or reach the table at first. Then I started eating the food my husband brought in and made them write down every morsel I ate on my record. Then I made an effort to learn to walk. My first effort to walk any distance was when I fell and badly bruised my arm and had a traumatic episode with one of the staff nurses shouting at me and telling me I hadn’t fallen whilst I was still on the floor and nobody could move me! I had nightmares for weeks.
tough times , I’m sending empathy. I had a gastroscopy in April without sedation and it’s not too bad, you’ll be able to tolerate it given what you already endure. I too am worried about my urgent ref to gyne to rule out ovarian cancer on 19th, not sure what the scopey pokey is called. I have a colonoscopy pending due to very similar symptoms you describe, abdomen pain, weight loss, fever, malaise and the scan suggests diverticulitis. I also have vaginal spotting, flank and rib pain and suspect chostocondtritus (?) . My research led me to consider MAS which is possible with Stills Disease, I find comfort in knowledge.. Anyway I have a lot going on so know how you feel exactly and understand. I’m sending you a huge hug and strength and will be thinking about you. I try to do deep breath to control my panic and it helps quell it a bit . We must remember urgent referrals are made to rule out things as well so that’s the positive. You’ve done so well and this is just another step and then you’ll be on the road to recovery I’m sure xxxxx
My word you have a lot going on and yet have the kindness to help me with words, which you have. Thank you. I have costochondritis and it is terrible pain. Some days my ribs are burning. When I was in hospital they refused to give me my normal pain relief (a form of co codemol) but were virtually force feeding me morphine 4 times a day until I refused. The nurse said she would report me to a doctor so I told her to crack on and do it. Next day the doctor came to ask why I was refusing pain relief. I explained I was refusing INAPPROPRIATE pain relief because it wasn’t touching it. Eventually he gave me the meds I use at home and within 25 minutes the pain was gone. It was as if a weight had been lifted. At home I use Solpradine Plus but they gave me the stronger Co Codemol. Sorts it out every time. I only take them for a short period of time when it’s really bad. I hope the 19th goes well for you and the colonoscopy. Thank you for your advice. Big hugs to you. X
I use paramol for my ribs, which are codeine based , and they take the edge off, the down side is constipation and I’ve read codeine may cause diverticulitis which I’m being investigated for amongst other things. It’s difficult to take something that doesn’t have a knock on effect isn’t it. The good news is it’s Christmas soon and means sprouts and means no constipation 😆
Hi Bowenlady, wow what a time you have had! No wonder you’re stressed about the endo. It’s hard not to worry about the worst-case scenarios, especially when you have actually experienced them! I’m crossing my fingers and toes for you, and feel free to ‘moan’ here as much as you wish. Please keep us posted on how it goes, we would love to hear an update.
I went for the CT scan on Wednesday. They could not get the thin cannula into me but after 5 goes it was in. That took over half an hour. The scan was from the top of my throat to just under my pelvis. Don’t know whether to be scared of that or pleased! 2 weeks for the results. X
What a drama with the cannula! Glad they were able to get in in though and complete the scan. Sounds like they did a very thorough job with scanning that whole region. All the best with the results—and with the wait. 😬🌻🌈
Thanks. Today I had my endoscopy from the top of my throat to the duodenum. I had sedation and didn’t know they had done it! They did 8 biopsies in 4 areas and confirmed there was no cancer. I am so relieved. X
update on my tests. The endoscopy was fine. I had the sedation and what seemed like a few minutes later they told me to lie on my back saying it was done! I felt nothing and was not aware they did anything! Phew! The endoscopy included 8 biopsies in the oesophagus. Everywhere else they just took photos. The doctor told me there was no cancer and the biopsies were just to examine any little areas but no cancer. I was elated. Yesterday my GP rang me to say he had the CT results. All my bowel is clear. There is a small hernia but so small it’s nothing to be concerned about. There was, however, some thickening of the distal end of my stomach. He wanted an endoscopy done ( you know like the one he sent me for last Friday!) and I explained I’d had one. So he said we’d wait to see the results and to phone in 12 days time if he doesn’t phone me first. I asked what he thought it was and he said he doesn’t know, which I’d expect him to say. We finished the call and 5 minutes later the surgery receptionist rang to find out who my gastroligist was. I said I don’t have one, that I saw one in hospital but never spoke to them as I was concussed and had amnesia. She queried it again and said the doctor needed to know. I then pointed out that HE had referred me to a bowel specialist urgently and I was still waiting! “Oh okay” was the reply. I did the worse thing possible and did Dr Google and realise that it could be gastritis, start of an ulcer or many other things. Or it could be cancer! I’ve just got to wait. But photos of the area they say is thickened have been taken. So when he gets the biopsy results they will all be from the oesophagus not my stomach. This is such a worrying time for me and my family. X
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