Hi, just to follow on from my previous posts on blockage and A & E etc. After another ct scan, which was clear I then had a barium enema x ray and that was also clear. The bowel consultant said I have a insisional hernia which is partially blocking the bowel. This is causing the pain in my neck and shoulder from the phrenic nerve in the diaphragm. I also have hot flushes, burning feet and the nerves in my left arm tingle when I get up. ( This was a big problem when I had my, and I assume temporarily blocked bowel experience back in March). He said they would not operate unless I become an emergency!! My GP does not agree with this. Now taking Domperidone four times a day, which I understand pushes the food through your system quicker. Going through a learning curve, can't eat a proper meal, diet is limited, loads of food cause gas. Taking peppermint capsules, tea,also other herbal teas. Windease tablets. Doing yoga poses to release gas. Its a very painful condition and my worry is that I will have the A & E experience again, and that down the line I could be having to cope with chemo and this. By the way although I have some twinging in the bowel area the pain is in the left hand side of my neck and shoulder and I have to massage the left hand side of my shoulder to belch it out. This has been horrendous. Lost about 10lbs, had it to lose, so that's OK. Whether I have an op, I don't know yet, waiting for blood results to see if I have any infection going on. Its 3 years since my op but I believe hernias can develop years later and I think it has been agraivated by coughing from mucus colds. I am going for reflexology and acupuncture to see if that will calm down my nervous system on the left hand side, actually recommended by the GP.
Best wishes to you all in this bumpy journey. Trix
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Sounds like you've had a hideous time, but sounds like you are managing it well and taking all necessary precautions. But it's grim isn't it?! I'm still in a similar position after my bowel obstruction. I can feel things still aren't right but managing it as best I can. Like you, have had reflexology and acupuncture both of which I think have helped.
Eating a very low fibre diet to help everything pass through easily and ensuring no constipation. Can only eat much smaller meals than I was, so little and often at the moment.
I can't understand though why they have said they would only operate in an emergency situation. This seems very shortsighted, surely better to do a planned procedure. I am still a possible for surgery but was told the exact opposite to you in that they would much rather operate when the bowel was less inflamed in a planned procedure than in a much more dangerous emergency op. Sorry not trying to worry you more, just it makes sense doesn't it? Perhaps they mean in you circumstances surgery isn't warranted yet so wouldn't consider it unless you deteriorated?
Hi Lynne, thanks for your reply, is your problem due to a hernia also? It was the bowel consultant who said " no one would want to operate until it was an emergency" my oncologist is no longer involved now, CA over the last few months has risen, 59 was the last one I know of but I have been suffering since Christmas so it could be inflammation. Having another blood test next week along with tests for infection and other things I think. Seeing another GP now who is a cancer Dr and very good. I think they don't want to bother because of the cut backs. I didn't suffer from constipation at all, that dept was very good but something happened that Monday that put me in a & e and have been getting worse since, abit better now with the tablets. Yes it makes sense to do it whilst well. Trix
Hi Trix, no my bowel is narrowed right at the end of the large colon due to disease. There doesn't appear to have been any progression there to cause this, has always been the case, but for some reason has flared up. Hoping the chemo will ease the problem, but it could also be compounding it due the effect on the bowel, so bit of a double edged sword.
Maybe that's the difference in advice that yours is a hernia and possibly further up in the bowel. I'm guessing of course. For me if it continues to be a problem I can see me heading for a colostomy to bypass the problem, but it doesn't sound like that they are suggesting this would be applicable for you. Maybe they can operate to sort the hernia? Hope your appointments go well next week and you get some more answers and relief.
Thanks Lynne, sounds a bit different to me. My left side of tum is very distended, and I thinking I have made this worse with coughing so much with these dam colds. So any weight loss for me will help. Take care, Trix
I was thinking that treatment may help yours Lynne? Each treatment in its effect is unique... Well, I have that in my mind and I hope so for you.. T xx
Hello Trix, Glad to hear they've finally got to the bottom of what's going on, although I can't understand why they aren't going to operate. I've been very interested in your posts as a few weeks ago I was also having abdominal pain with pain in my left shoulder when eating. The pain in my shoulder also used to radiate up my neck and was often relieved when burping. My CA125 was also elevated. Since resigning from my job which was causing me a lot of stress I've been feeling so much better, and I'm convinced that my bowel was inflamed. My CA125 has also come down. Kerry x
Hi Kerry, what you have suffered is spot on with my symptoms but they have been severe. My husband has had to use the electric massager on me and I have burped for up to half an hour. One night I woke at 2.00, feet and legs burning, at screaming point, and it took nearly an hour to get the wind out if me. I think if my blood test comes back with any infection my Dr will push for the op. She has said about going private, about £3,000 I think, will have to sell the heirlooms ha ha.
Hi there .. I had the same symptoms as you and ended up in A and E with two separate but 'next to one another' conditions. A necrotic nodule caused problems in the incisional hernia which then became inflamed and then got stuck too. I wasn't very well at all with the op being done out of hours on a Sunday night. I was in so much pain and very upset. My oncologist said later that she knew about the aggressive area at the front which had almost a 'Watch and Wait' all of its own. I think surgeons try to void any kind of trauma, but in my case, the whole thing would have been far less traumatic and risky if I'd had the op when I was well. Having said that, I'm not sure it would have been quite so obvious what to take out had I had it, say, 12 months before. Although I've already had a small bowel resection, I was spared it on this occasion but I was told before the op, it would be more than likely than not I'd need a colostomy. I feel oncologist has your best interests at heart because whilst there are benefits in doing the procedure early as in now, there are risks too. I feel that the patient should have a say in what is done and if I were you (which I'm not), I would ask to talk this through again with your oncologist so you really understand what's happening. I say this because you have heard conflicting views and your GP isn't happy with the decision. Before doing anything though I'd ring Susan or Ruth at Ovacome for some clarification of your situation. Love T xx (Sorry for the TL,DR reply!)
Hi Tina, that was horrific for you by the sounds of it, I want to avoid being an emergency. My oncologist and nurses could not see anything in the scan that could be causing me so much pain including the hernia. It took an appointment with a bowel consultant to look at the scan and tell me that was the problem, he then said about not operating until an emergency but I could have a barium enema xray if I wanted one. I was quite shocked when my nurse said they could find nothing on the scan but she said they could not see inside the bowel so that's why I ended up seeing the bowel consultant. Yes good ideal to speak to ovacone nurses, will do that. Trix
Hi Tina, burning feet, at last someone with the same problem, I don't think everyone gets this. Prior to my original diagnosis and reoccurrence I had burning feet and night sweats, my nurse said she had never heard of night sweats with cancer and whenever I mention my feet the oncologist does not seem to have an answer. But when I had my reoccurrence I had carbo with paclitaxel which also caused burning feet and sweats, so I am a bit mixed up over it. As I have had both over the last few months and my scan is clear but I have bowel problems - could it just be from the nervous system as there is something wrong in the abdomen - just thinking logically. And how were you after your op on the bowel - did it solve the problem, was it open surgery? Thanks Trix
I had burning feet at diagnosis. They were red and peeling. When I had chemo and improved, it disappeared as did the psoriasis on my arms and legs. Since last year, when I had the confirmed recurrence but no treatment, the psoriasis came back and I've been on cold tar for my arms and legs. My feet, didn't respond, so I've been on topical steroids and I'm seeing an improvement at last and one foot is back to normal as are my arms and legs. My oncologist said she often sees chemo improve psoriasis or see it disappear completely. Whenever the body is under stress, psoriasis can appear and I feel the recurrence caused my foot psoriasis which looks red and inflamed and almost like sunburn. You could maybe ask your doctor about this to see if the added stress may be causing it. My brother has foot psoriasis which is mild but they look like they're burning. I use a cold tar solution which my skin specialist gave me and moisturise them well. I feel they'll stop burning once I have chemo and both my skin specialist and oncologist say that's probably going to happen. The thing is, the chemo lowers the immune system and psoriasis is an autoimmune disease. However, my post chemo remission from psoriasis during the brief lowering of my immune response doesn't explain why my psoriasis stayed away whilst I was a little better for two years. As it came back with a vengeance on recurrence, I feel they are linked which is why I'm having problems now. My doctor thinks they are. Anyway, yes, about calling Ruth or Susan .. I think that's a good thing. Love T xx
Thanks Tina, I think my burning is totally different to yours. I have no redness, peeling or anything - normal, but I get this burning sensation on the soles that feels like someone is holding a lighter over them. Plus some tingling over the tops and up the ankles - I think that one is the pactaxcil damage. Only peppermint oil spray or a cold water bottle helps. Thanks Trix
I know that Taxol can cause peripheral neuropathy so maybe that's what's causing yours. I can understand how hard that is. I had single agent carboplatin but a women who had chemo with me had the other too as so many women do and had a terrible time. Actually, I might try peppermint spray on mine as I know it's soothing. Love T xx
I was talking to a friend with lymphoma recently. She told me that night sweats were a recognised symptom of that cancer! And paclitaxol does make feet feel peculiar.... a kind of frigid burning I would say.
Hi Jenny, Thanks for the support, if I was offered a couple of months of chemo or bowel blockage problems, I would snap up the chemo, which says it all. At least with chemo I could eat, sleep and was not in so much pain. Take care. Trix
Hi Trix, my symptoms have been mild in comparison to yours so I can completely understand why you want the operation. I hope you manage to get sorted very soon and it's not because of another visit to A&E. Kerry x
Wondering if this could be a case for asking for a second opinion?
I'm definitely with you not wanting to have an op as an emergency. I did - 4 days after the OC surgery. There wasn't an option to do anything other than emergency surgery as my bowel was at risk. My symptoms weren't the same as yours and I wouldn't want anyone to wait to be in the pain I was in. Yours sound really debilitating on a day to day basis ( even if it's turning out to be a novel weight loss programme!).
Hi, Thanks for your replies, strange that my nurse does recognise the night sweats, that's why I was sure I was heading for a reoccurrence, they have eased off quite a bit now. And yes that's a good way to describe the feet - fridged burning, they are still cold even if they feel burning to you. I will probably get a second opinion on the hernia, but will wait for the blood test results and my GP wants to look at the scan herself and its not on her computer yet. My oncologist is I think the top one in Bristol and he says my scan is clear other than an insy insy insy swollen node in the abdomen that he could not see and had to get the radiologist to show him. Even if this is a reoccurrence starting it should not be causing all this. It is very debilitating on a day to day basis but I am starting to feel better, with management, in fact if it was not for this I would feel very good, so must be gratefully for the clear scan. Take care.
I'm there with you and the hernia, I thought at first it was asciites returned but it is an incisional hernia from last years debaulking op. I never realised how many degrees of flatulence there was!!! I find an odd domperidone works here and there or it appears a supermarket trip walking round trolley!! Not sure if it's the excercise or excitement that stimulates! Way past embarrassment now! Good luck
Hi fellow suffer, yes I am on four Domperidone a day !! Gas has been horrendous and the worse pain ever in my neck. One thing I had used in the past ( when my hiatus hernia played up) and was good, is activated charcoal, it absorbs the gas. I went to Holland & Barratt today to see about other things I might try, and when I told her the problem she said straight away - charcoal. It does work so I will start taking that as well. Give it a try. Best wishes, Trix
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