What a week..been really swollen, constipation intermixed with looser stools, headaches, nausea..was so desperate for pain relief on Saturday I spent 3 hours at the hospital only to be told I should take Oramorph, which I did as desperate for some relief..downside of which spent 3 days even more constipated..and after plenty of fluids and senna to move my bowels today i am back to being bloated, passing gassy and painful stools, feeling very very sick and am exhausted.
To boot am having a lot of sleepless nights with my eldest child who has autism.
I am seeing the dietician next week, though she said on the phone a few weeks ago that I should be feeling a lot better on the diet by that stage (6 weeks in). I feel so depressed as had high hopes on this diet working..not sure I see any point in continuing when im back to square one!! ive been so careful with the foods allowed too.
Its like ive been poisened, my whole body aches and I feel swollen inside from my oesophegus through to my lower abdo...along with the symptoms ive already mentioned above.
Im lost can anyone help or advise ANYTHING????please...really desperate.
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sickandsore
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Hi there, as you're clearly trying all the dietary measures are you happy to add in supplements? There area few things I can suggest if you are willing to try?
Hi sickandsore, so sorry to hear this. Seems like you have a lot going on besides your own symptoms. I would really suggest you try meditation. It will help you to cope with issues that arise and ultimately keep you calm and therefore help you also keep pain down.
There are bound to be some free classes near you.
Also take a look at 'Fast Tract Digestion IBS' a new book avail on kindle, it looks at a different approach to dietary elimination than FODMAPS.
Also are you taking flaxseeds in your diet???
Have you kept a food diary together with symptoms after each meal? I found this helped me to track the culprits.
This all sounds very familiar-you poor thing. I have had the worst few months with my IBS and my husband has had to dial 999 on several occasions when I collapsed from the pain. I am on daily Zomorph and Oramorph which just about keep me from crying with pain. Ditto with the constipation due to lots of morphine though so on suppositories for that! Just to add insult to injury really
Please keep your chin up and make sure you have every single darned test for everything. IBS is so vague and has a wide spectrum of sufferers and sometimes it ca be something else such as coeliac or crohn's disease, or even food intolerances. There are alternative treatments out there like reflexology, hypnotherapy, physio etc but it is a postcode lottery as to whether the NHS will fund things where you are or whether you have the means to pay for things yourself. Sorry for the ramble but I really do feel your pain!!
I know what you mean, at the moment I am having a lot of bother wi8th bloating. People dont realise sometimes just how painful that can be. I sometimes feel like I have razor blades in my guts! Sorry if thats a bit graphic but its the best way I can think to describe it. I find that Buscopan helps with this kind of pain in the short term, which you can buy without prescription also I have been using 'wind settlers' again its available on the medicine aisle. That has given me some relief.
Hi. ive had ibs since a child. im now 44. last year i had a camera after keeping on at the doctor as my symptoms were getting worse. ive got lymphocytic colitis which is why i can be in so much pain. go to doc and demand tests. you hv to keep on as they wont offer aby. goodluck xx
Hello, your post hit a chord with me, I suffer the same symptoms, although not to such a high degree. The bloating is so horrible, and misunderstood by the GP and consultant. It does feel like being poisoned and it makes it difficult to function, especially with children to look after. It must be difficult when your eldest child needs support. Over the last few months, this website has not only offered me some excellent advice but mostly supported me through understanding the symptoms. You have been given some good advice by the others. I had some luck with acupuncture, to echo Kerrym212's advice. I also have found linseed brilliant for constipation. I can go 10 days without going to the toilet and found that movical, senna and all the other laxatives prescribed by the GP ineffective, linseed (which I add to my food or yoghurt) with water flushes me out in a day. If I remember to take it regularly, then I am regular. The other thing I found useful was 5 days on a very strict diet (I followed the Hardcome diet) which meant no sugar, carbs, fruit, caffine or dairy. It was very restrictive, but I felt better after the 5 days and continue to follow the fodmap principles (although not strictly) and this seems like good maintainence for the time being, although knowing ibs, nothing is a certainty!
My IBS doesn't cause me constipation very often or 'pain' per say...its mostly always very watery. If this goes on a long time I o get what I call 'gravel guts' which feels like small shards of hot grit in my guts. A long time ago I was in a very bad state indeed and very frightened. I was on vacation and taking everything and anything to be better...nothing worked and I ended up going into a German hospital for ten days. The Dr was fantastic. Kind and helpful and dedicated..he took me off all food for ten days. First I had a drip only, but my fingers swole up a lot, so I was put on herbal teas, and that I managed
I went to the hospital again a few months later as things were starting to get bad again, by this time i was back home in Sweden. I was in a lot of discomfort. The Dr there said something I won't ever forget.. 'Medicine is not your answer, its your problem' . It was like a lightening flash! I had suffered more and more and taken more and more to try to find something that would work. From that day on, I realised that every medicine I take, my symptoms get worse and worse. It might get better in the short term but in the long term its much worse.
Now I steer lear of every medication I can. EVERYTHING! Especially Paracetamol for headaches, which make me feel constipated then runny and very very manic a couple of days later.
With IBS you have to be a hard 'listener'. You have to tune in your brain very carefully to your body and its reactions. Every IBS is very very different. Depression and chemical changes in the body also I believe are cause by gut imbalances..not the other way around! I get very low and depressed and exhausted before a bout of IBS by anything up to two days. For me its a signal. The more violently depressed I get, the worse the IBS.
People don't realise, and that includes most Dr's, how awful IBS is. It isn't just constipation and bloating..or pain..its depression and weakness and loss of enjoyment in life and sleeplessness.. It ruins jobs and even relationships because of it affecting energy and self image and people don't understand. Its like Diabetes..'oh Diabetes..you can take a pill or that nowadays its no big deal..they have injections for that..its no big deal' they say dismissively..well it aint that simple!
But you have to fight! Some day someone will find the answers to this disease and we will better understand what has caused this. Meanwhile try to eat and note what makes YOU feel worse or even better. Write it down. Drink a lot of mint tea and avoid alcohol at all costs because your oesophagus sounds acid burned. Find out if you have a hernia. Acid reflux is very bad. Try to stay off acidic things..see if it makes your body worse or better..write it down! I get acid in the oesophagus and its awful. I am Diabetic and to have to take one medication whether I like it or not. If you have bloating, don't eat after 6 at night and if you do, sleep higher up. If you need to, loose weight, so your stomach doesn't press up the acid while you're asleep. Better to develop a system where you learn healthily how to control things as much as you can naturally than depend on any nasty chemicals to help.
Don't give up my fried has a severely autistic child, I know it isn't easy. I hope you get some support from the government
I hope some of this long post has helped you and maybe some others and I hope any Dr's reading this (which I doubt) not be so blaze' when dealing with us and our IBS because it isn't a small disability.. And DR's if you're out there, don't always buy into what the drug companies are saying and selling you! After all it IS a business!
This is a really excellent post, which everyone should note. Well done, Willowhisper.
I have had Crohns and IBS for over 30 years. 17 operations later, I can tell you that the most important thing is to listen to your own body. Each of us is different and our microbiomes are unique. What helps someone else may be terrible for you and vice versa. That said, here are some observations from my own personal experience.
Like Willowhisper, I also found that many medicines make things worse. The first 11 operations I had were in the first 9 months post diagnosis, until we ( my consultant and I together) discovered that steroids (prednisilone mainly) made it awful. After that, operations have been spaced around 5 years apart.
VSL#3 is a probiotic which helps me to repopulate my personal microbiome very well. It was prescribed for me originally by Kings College hospital in London, but is now available otc on the web. Symprove is another one favoured by King's now, but disagrees with me personally.
Try to be very sensitive to what your body tells you and only adjust in tiny increments. Think about driving a car- lights touches, not yanks on the steering wheel are best.
Most of all, do not believe that this is a life limiting condition. I have a daughter (now adult) and have held down a very demanding job, rising to the top of my profession and working c 12 hours a day. I have represented my country in a tough sport and travel all over the world. I have achieved much of this because my lovely consultant has recognised that with this disease, the expert is the patient, not the doctor. Good luck and keep listening to your own body.
Oh... And I believe it was medicines and chemicals that caused the gut damage in the first place long ago! They always either mask things or fix one thing while causing another. Beware everyone! The more natural you are, the better!
Hi sickandsore, FODMAPS did not work for me either. The gluten free part made me very constipated! Unless your doctor tells you you have celiac disease, why torture yourself?
I have problems with only one group: the one with broccoli. I have IBS-C and have been seeing a GI specialist. Physical therapy for abdominal pain helped. The GI prescribed Linzess, which helps the colon retain more water. Instead of metamucil and senna, I am to take methylcellulose bulk laxative. I supplement because I have deficiencies in D and B12. So I take Vitamin D3, a B vitamin supplement and magnesium citrate to help absorb calcium. Also a tsp flaxseed oil before breakfast and extra virgin olive oil before lunch or dinner. Exercise and fellowship!
Did I say I also have PD and no thyroid. After 7 years of crippling pain, I am feeling better! Yay
Just give miralax a try. Stay off the wheat, refined sugar and soy. Of course, broccoli and beans probably go without saying. Also, look into taking a turmeric supplement from a quality source, like NewChapter. I am taking their Zyflamend whole body in the morning because it has green tea extract and don 't want to affect sleep as much as I can. People's health pharmacy in Austin sells it, but I am sure you can find at you local health store or on line.
Really helps with over inflammation.
Hi sickandsore. All I can add, everyone else's responses have been very comprehensive, is that I have stopped eating broccoli, cauliflower and red grapes. Although I someones suffer griping pains, which I have done over the past couple of days, I am much better than I was a few months ago.
I have yet to go on the FODMAPs diet, I'm waiting for the Dietician to be trained, it may work for me but if it doesn't then I will try other things.
Best of luck and I really hope that you finally find something that helps you.
Hi, I would wuggest you start the FODMAPS yourself. I started myself 2 monrhs ago. It took two months to get seen by the dietitian and when I did I found I know more than she did.
There is lots of info on this site and you can always post for more specific help.
Bibabunny. You mention Linseed. How do you take it. Oil or seed and in what quantities and when?
Thanks ibsr and I will look at the links on the internet. I do think elimation works as I have proved that by feeling better than I was say this time last year, by cutting out the broccoli, cauliflower and red grapes.
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