Newbie hoping for some advice

Hi I'm new to this pain forum and could do with a little advice from fellow sufferers. I have severe chronic IBS (best guess diagnosis!) with horrific lower abdo pain, frequent fainting and incontinence, as well as lack of control of body temp, shaking and disorientation. It's been nearly 8 years of getting worse and worse. I've had every test, tried very diet and drug imaginable, seen GI and Pain Management people and am currently on Abstral (Fentanyl) tablets since the start of 2015 as a last resort because they are the fastest absorbed painkiller that I can give myself at home. However, the senior GP at my local surgery rang last week to say I couldn't possibly continue on these, I'd had my last prescription of them, because I was costing the NHS too much money and I would bankrupt the surgery, so I would have to switch to morphine tablets which in addition to the horrible side effects of nausea/dizziness/constipated and the feeling of being dead drunk, take an hour to work, leaving me in agonies of pain and with all symptoms blazing, in need of assistance to even get of out bed to the loo. In the past this has left me needing frequent emergency admission to control and manage the pain but since being on Abstral I have been able to manage better on my own, even managing to leave the house occasionally and generally feel a little more independent and a little less disabled and isolated. Sorry for the long post but if anyone has any advice on how I can fight this lack of consideration for not only my pain management but my quality of life (which isn't great but will be considerably worse) and be left once more needing frequent emergency care, I would be very grateful. I'm only 31 and feel my whole adult life has been on hold due to this horrible life changing illness.

16 Replies

  • Have you tried Fentanyl patches? A controlled slow release version that keeps your body receiving the pain relieve that you are used to and at a method that goes straight through the blood stream for 72 hrs and then change the patch. HTH regards, Rib

  • My pain isn't constant it comes on suddenly and without warning (0-10 in less than a minute) so the fast acting tablets mean I don't have to continually have the fentanyl in my system when I'm in mild pain. My pain management consultant has said that the patches don't allow control over the sudden severe peaks in pain I get several times a day.

  • Have you tried Movicol? Is a powder added to water to drink to help constipation.

    I also have IBS but was given this from GP following surgery due to a different problem. I discovered that this simple med helped my IBS significantly as well as sorting original problem it was prescribed for!

    I now don't take it every day but as and when I need it. It stops excessive pain etc.

    Was amazed how well such a simple thing could assist with a long term issue! It is NOT a laxative but helps to soften things!!

  • I can't tolerate anything that goes through you, tablets, liquids, powders-bascually to be blunt if I get constipated the only option is suppositories or enemas because they only work locally.

  • That does not sou nd good at all. I presume you have looked at causes such as diet and stress. OK it's much mi!der than you but three members of my family suffer from IBS. I very rarely get it now as I stopped work which removed a lot of stress and I'm on morphine for back pain which means I take Fybogel powder to regulate my bowel. My grandson who is now 11 has had it since he was 5 . We have worked out its stress with him. Likewise my daughter who has stress IBS. She has been having therapy for ME and her IBS is much better.

    You do seem to have explored many avenues. Poor you it sounds hard to bear. You have been tested for Crohns disease I hope ?

    I wish I had better suggestions. My heart goes out to you.


  • Have you tried Psyllium?You can purchase it at good health shops.This is much cheaper than branded products and is extremely effective.

  • Have you been referred to st. Marks hospital. It is a specialist hospital in Harrow, which is known world wide as Tops for bottoms. Ask your GP for a referral. From personal experience, they are brilliant.

  • Yes, two years ago. I saw Dr Arebi twice and the first time she said I'm glad you've been referred we can try and get to the bottom of this and figure out how to help you, and then my next appointment 6 months later (I was actually taken ill during my appointment!) she told me to stop requesting tests and investigations, I should just get on with my life and be thankful I don't have cancer. To which my response was well if I had cancer you would have a plan and support and advice-instead of being sent away to live a life in pain and without help or support of any kind. She then discharged me back to my local hospital, who by then had also discharged me, thinking St Marks would take charge of my care! Today I have a useless GP (most surgeries where I live aren't accepting new patients so am stuck there) and a pain consultant who I see twice a year. That's it. No care plan, no named doctor in charge of my husband and I just have to somehow cope which is getting harder as I get worse.

  • I don't like giving a specific doctors name out on the open air, but if you pm me i will give you the name of a good research doctor at St Marks. I can't promise it will do any good but at least you are trying .

  • Whilst pain management is crucial have your doctors looked at the cause of the pain?Triggers?Allergies etc?

  • I have been tested for coeliac and fructose and lactose intolerance, through biopsies, blood tests, stool tests, breath tests and exclusion diets. I've had stress counselling but the counsellor kept going on and on about childhood trauma and wouldn't believe me when I said I had a lovely childhood and adolescence-until my illness I was a normal, healthy, happy 23 year old with my whole future ahead of me-she couldn't grasp the fact my illness was diagnosed post-gastroentis rather than because of emotional trauma. So I didn't take much away from the sessions other than I felt I wasn't being believed about what I said! I have been on a waiting list for the last 8 months for hypnotherapy (through pain management clinic) but the therapist has now left so that might never happen and I don't have the money to pay privately. We did once save up the money to see a private GI consultant but he took one look at me and said if you've seen my colleague at the local hospital I won't disagree with her, I've nothing more to add. So that was a a waste of £300 that could have been better spent on paying the bills!

  • I understand what you are saying,I think we have to be pro active in our pain.I am sure the stomach pain is real.The stomach is known as the second brain so perhaps that is the reason for the 'pseudo psycho babble?

  • Horrible. David has it severely too and the only meds he takes for it is Imondium. Helps but no cure. All part and parcel of his back injury.

    There is a forum within HU. They have some good posts from fellow sufferers. Don't want to psh you out but have you tried posting with them?

    Apparently it is far more common than most people realise even without taking any strong pain meds.

    Good Luck

    Pat x

  • Yes I've posted on the IBS forum but not found anyone with a knowledge or experience of taking painkillers any stronger than co-codamol so I was pleased to find this more specific forum. Thank you all for your replies it is nice to know I am not alone even though it really feels like it sometimes.

  • My sympathies all the way, and you being so young must add to the constant feeling's of feeling so isolated, because people switch off when you mention certain thing's like pain to them as it is so difficult to know what to say to someone feeling so bad all the time, my best wishes Alex

  • Ring up NHS England. If you have been on a drug since start of 2015 you should not be coming of it cold turkey. I am not going to get into the ins and outs of the drug. However I am highly concerned that you are on the last prescription and there has been no tapering off plan been put in place.

    Google "faecal transplants".

    If you are only relying on drugs to handle your pain and discomfort then you are reducing your control options in regard to quality of life. No one diet or any one therapy is going to be helpful. You are going to study a variety of different approaches all of which start at studying yourself 24/7.

    For self study there is meditation and mindfulness. They will give you the means to observe yourself. Job in the old testament is worth reading. The religious traditions have been attempting to tackle your issues for thousands of years. It is worth looking for a religious tradition that will suit your temperament and then learn what it has to offer.

    For help with developing better physical awareness there is yoga and Alexander technique.

    There are no cures only a means to develop better management of your condition.

    Hope this helps

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