I'm ready to give up

It's been almost two years since endo caused me to have a bowel resection and ileostomy and my bowels still don't work. I depend on laxatives and enemas to move my bowels every few days. I'm almost always in pain; migraine, rectal pain, crippling back pain, abdominal pain or a combination of two or more. I've gotten to the point where I've had to stop working because I keep falling ill. I'm divorced and live alone and I'm sure the isolation and lack of help has made me completely depressed. In the last year, I've gained 30kg and 5 dress sizes. I've tried in vain to diet and I've given up now. Most of my medications have weight gain as a side effect and I'm at a total loss as to what to do. I've recently started having seizures and two weeks ago I suffered a seizure in the hospital and went into cardiac arrest. I saw a neurologist on Tuesday and she tried to fob me off and said I should stop throwing words like "seizure" and "cardiac arrest" around. Because it happened in another hospital and she doesn't have access to my notes or the report, she dismissed most of what I said. I asked her to request for my notes from the hospital and left feeling terribly upset. I've gotten to the point where I'm tired of begging doctors for pain relief, begging to be believed, begging for my symptoms to be taken seriously and begging my family to understand. I believe my whole family is in denial and they pretend all is well. Sometimes I wish the doctors hadn't tried so hard to resuscitate me after the cardiac arrest. I feel so out of control, so alone and so unhappy. I can't even recognise myself anymore. Im so tempted to just give up, roll over and die. This burden is too much for one person to carry. I'm so exhausted....I just want my life back.

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  • Hi there LadyPenelope

    I do hope that you have gotten through this really difficult period, your symptoms sound awful and I can fully understand why you feel so damn awful. One thing compounds another, the bowels are a very important function of general well being and if they are sluggish it makes one feel awful with bloated stomach and stomach cramps and other unpleasant feelings. Just the bowel issues alone are very draining. It is so important to keep your body as well as you can despite having a thyroid condition. A very important factor relating to your bowel is your diet. Gluten often makes the bowels sluggish and things like white flour and bread and pastries and refined processed foods are much harder for a person with a thyroid condition to process, therefore, it might be a good idea to look at the foods that you are eating and see if you might be able to make some changes that will help the bowel to function more effectively. Also drinking water to flush the bowel out not excessive but try to ensure that you are drinking enough water.

    What sort of support are you getting from your GP? Have you had your thyroid checked recently to make sure that you are on the correct level of medication still?

    You mention that you have had some very serious health issues, how are you now? I really hope that you have had some medical intervention and that life is getting better for you.

    If you get to read this reply I would very much like to hear how you are now and really hope that life has taken a turn for the better for you.

    Take care and look forwards to hearing from you.

    Tigerlily xx

  • It's been almost two years since endo caused me to have a bowel resection and ileostomy and my bowels still don't work. I depend on laxatives and enemas to move my bowels every few days. I'm almost always in pain; migraine, rectal pain, crippling back pain, abdominal pain or a combination of two or more. I've gotten to the point where I've had to stop working because I keep falling ill. I'm divorced and live alone and I'm sure the isolation and lack of help has made me completely depressed. In the last year, I've gained 30kg and 5 dress sizes. I've tried in vain to diet and I've given up now. Most of my medications have weight gain as a side effect and I'm at a total loss as to what to do. I've recently started having seizures and two weeks ago I suffered a seizure in the hospital and went into cardiac arrest. I saw a neurologist on Tuesday and she tried to fob me off and said I should stop throwing words like "seizure" and "cardiac arrest" around. Because it happened in another hospital and she doesn't have access to my notes or the report, she dismissed most of what I said. I asked her to request for my notes from the hospital and left feeling terribly upset. I've gotten to the point where I'm tired of begging doctors for pain relief, begging to be believed, begging for my symptoms to be taken seriously and begging my family to understand. I believe my whole family is in denial and they pretend all is well. Sometimes I wish the doctors hadn't tried so hard to resuscitate me after the cardiac arrest. I feel so out of control, so alone and so unhappy. I can't even recognise myself anymore. Im so tempted to just give up, roll over and die. This burden is too much for one person to carry. I'm so exhausted....I just want my life back

  • LadyPenelope, I'm so sorry you feel so ill and desperate. Can you contact the team who did your resection and ileostomy for advice. You should also be advised on what sort of diet is good for people who have had similar surgery and perhaps referral to a pain management clinic.

    Your surgery may have affected your ability to absorb thyroxine and nutrients so ask for thyroid function test to check your levels and ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges in a new question and members will advise whether supplementation is required.

    As TigerLily says, it is important to drink plenty of water to keep hydrated and this will help bowel motility.

  • What did the endo do that caused that? What endo problems do you have and what medication are you on?

    Do you have your latest blood tests results? You should get into the habit of always getting printouts of them.

    Sometimes you just have to take control of your own treatment and, sadly, that is what you need to do. The doctors have failed you and are useless. I can empathise with that.

    You need to do your own research and find out what works for you. If you start with getting your latest results and reproducing them here, people can help you work out which tests haven't been done and what the results of those that have been done show.

    I "use" my GP to get tests done when I want them. That's all. He's like a chocolate teapot - sweet but useless.

  • It's been almost two years since endo caused me to have a bowel resection and ileostomy and my bowels still don't work. I depend on laxatives and enemas to move my bowels every few days. I'm almost always in pain; migraine, rectal pain, crippling back pain, abdominal pain or a combination of two or more. I've gotten to the point where I've had to stop working because I keep falling ill. I'm divorced and live alone and I'm sure the isolation and lack of help has made me completely depressed. In the last year, I've gained 30kg and 5 dress sizes. I've tried in vain to diet and I've given up now. Most of my medications have weight gain as a side effect and I'm at a total loss as to what to do. I've recently started having seizures and two weeks ago I suffered a seizure in the hospital and went into cardiac arrest. I saw a neurologist on Tuesday and she tried to fob me off and said I should stop throwing words like "seizure" and "cardiac arrest" around. Because it happened in another hospital and she doesn't have access to my notes or the report, she dismissed most of what I said. I asked her to request for my notes from the hospital and left feeling terribly upset. I've gotten to the point where I'm tired of begging doctors for pain relief, begging to be believed, begging for my symptoms to be taken seriously and begging my family to understand. I believe my whole family is in denial and they pretend all is well. Sometimes I wish the doctors hadn't tried so hard to resuscitate me after the cardiac arrest. I feel so out of control, so alone and so unhappy. I can't even recognise myself anymore. Im so tempted to just give up, roll over and die. This burden is too much for one person to carry. I'm so exhausted....I just want my life back

  • Hi there lady Penelope

    I'm so sorry to hear what happened to you I have just been diagnosed with hyper but myself an family have also had 2 years of hell wondering if the stress brought on my problems

    2 years ago my husband had bad stomach cramps so he could hardly stand gp said it was food poising even though it had been going on a week it wasn't his bowel perforated

    And he ended up with a colostomy now 2 years on he 10 weeks ago had a reversal that went wrong and has now had a ileostomy

    he has had a lot more problems with this than the colostomy

    Mainly because of the restricted diet and the fact that you have to eat stodgy foods to help thinker it

    Clutter is right you may not be absorbing your drugs after all that why you are told to eat crisps every day as you won't be absorbing the salt so there is a chance that it will be the same for any meds you take

    I would contact the stoma nurse they are fantastic and they will understand and take you seriously

    All the best

  • Thanks Rush2112. It's so comforting to know that I have all of you to turn to for help and you understand exactly what I'm going through.

  • Thank you for understanding and being able to empathise. Because endometriosis has no external symptoms, most people are unable to empathise and you end up sounding like hypochondriac or seeking attention. I have endometriosis stage 4 which went into my bowels so I had to have portions of my colon and rectum removed during the bowel resection. I ended up with an ileostomy for a couple of months which was then reversed. After the reversal, my bowels refused to function. It was as though my body had forgotten that I needed to go to the toilet and had no idea what to do. The colorectal team tried all kinds of interventions including biofeedback but nothing worked. The bowels simply refused to restart. According to the Consultant, it's not that I'm constipated, it's just that the body simply doesn't know what to do. I therefore have to take laxatives or have an enema every few days. If I don't, after a while I start throwing up. I'm always bloated and nauseous. It's a terrible life! A change in my diet has absolutely no effect on it. I don't even get the sensation or urge to go to the toilet. Like you said, once the bowels are not working, everything else is affected. I think my GP is tired of me now, I don't blame him because I'm tired of myself and my many issues. He doesn't seem to know what to do anymore. After the resection, my rectum became hypersensitive so every time I do the enema or the laxative, I have terrible rectal pain. My body has become used to morphine so it doesn't work anymore. I'm seeing a pain management consultant as well. According to him, some of my nerves fire random pain signals even when there's no pain, and that's why I'm always in pain. I take gabapentin, propranol, oramorph, Yasmin and venlafaxine. My GP run done tests and my ferritin levels were very low. However he said because my bowels don't work he will only give me a small dosage as it causes constipation and he doesn't want to compound my issues. I think my GP is like rosetree's; sweet but completely useless. I wonder why so many GPs are so useless? I could go on and on...... Thank you for taking the time to respond. I will have the tests done and post the results here to see if I can get any help. It's past 1am and my eyes are shining like a torch. I hope I manage to get some sleep tonight. I'm having day surgery tomorrow and the last thing I need is to arrive feeling frizzled and frazzled :)

    I'm really sorry this is such a long narrative. I think I read somewhere that writing can sometimes be therapeutic. I must admit I'm feeling a bit better.

  • LadyP, use the orange Reply button underneath the post you are responding to and the member will receive an email alert.

    You've had a dreadful time, still are, so don't mention the hypochondriac word. Your problems are outwith the scope of your GP but you are still entitled to his care and he should be liaising with the colorectal team, your consultant and the pain management team to support you.

    I hope your surgery goes well tomorrow. Let us know how you are when you feel up to it. We can't help you much but we can listen when you need to 'talk' or let off steam.

  • Thanks Clutter. My surgery went quite well. The pain is excruciating but my threshold is very high so I'm not fazed by pain. I'm home now and trying to manage by myself. Lately every evening when I eat, I get a feeling like the food hasn't gone down, and it keeps threatening to come back up. No matter how hard I try, I end up vomiting. I'm sitting up in bed feeling lonely and sorry for myself. I'm sure tomorrow will be a better day.

  • ((( LadyP ))) I'm glad the surgery went well. The food getting stuck and making you vomit sounds very unpleasant, I assume you've told your doctors?

    I hope you're in less pain and feeling a little better today xx

  • Although I imagine you will be reluctant to think about more surgery, has anyone suggested an ACE (antegrade colonic enema)?. My granddaughter has Spina Bifida, and the nerves to her colon are damaged. She had an ACE a year ago and the effect has been phenomenal. Its done every other day and as a result she now has an appetite and feels far better in herself. It seems much more effective than an ordinary enema.

  • Thanks Ruthi, I must confess I don't know about it but I will do my research and recommend it to the colorectal and pelvic floor team. I'm willing to try anything.

  • They may of course have considered it, and have good reasons against, but it certainly sounds like you need help of some sort!

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