I guess I am not writing for answers, but more to tell someone how I feel.
I am struggling. After 3 years of pain, discomfort and constant trips to the toilet, I thought I could manage.
On Christmas day I was violently sick and in unbelievable pain in my stomach. The pain continued into boxing day and by then I had been 40 times in 2 days and my stool was now black. I was taken to a n e waiting room. After 9 hours I finally had a ct scan and blood test but yet again both were negative. The nurses face was 1 I'm so familiar with (I'm sorry I don't know what's causing this, I can't help). As tests were negative I was sent home. This was really hard to deal with as I thought this was going to be my chance to be fully seen and helped!
I'm still going to the toilet after every bit of food and yet still feel full and so am not eating a lot. I guess it makes this harder being over Christmas as I haven't enjoyed any of it, due to being in bed with this illness.
I do have flare up with ibs sometimes, but this time I just am mentally struggling. I do take antidepressants and they help every day, but I don't want to up them. Part of me is struggling as I feel it's not depression that needs to be sorted it's my stomach that's causing it.
I'm sorry to ramble about myself as so many people have it worse. I just wanted to tell someone how I felt without causing them more stress.
Have a good new year all.
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Roary4
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Very sorry to hear this. I am going through something similar.. been to A&E several times in the last few months with no answers. Now having to consider deferring from university.
Have you considered seeing a specialist or getting a referral from your GP to a gastroenterology specialist? Have you also had a faecal calprotectin test to rule out IBD? Or even a stool culture test? Just some thoughts.
Thank you. I am sorry to hear you are going through this as well, it is truly horrible. I am under the gastro team but because of covid its been 18 months since I have been seen. I did try private but I just cannot afford it
I've suffered from IBS and depression for 40 years. To me, they seem to go hand in hand. I'm glad you're on an anti-depressant.
Your IBS symptoms, though, sound truly awful. Not sure what to tell you there. I do like the idea of seeing a specialist. GPs/PCPs can be very limited, especially when it comes to something like IBS.
I totally empathize with you I've been struggling for 4 years like you several visits to A&E with no answers they just put it down to obs. I eventually had a colonoscopy and diagnosed with diverticulosis bit the lead up to Xmas I'm having a flare up two lots of antibiotics two lots for UTI bloods normal all bar liver, they sent me home as I was already on antibiotics nothing more they can do. I also have anxiety/depression which in the last few weeks have been highly anxious die to a fily situation out of my control. I'm currently on toilet and this is my 3 time within an hour,ankles/hands swollen new symptom alongside an external prolapsed hemorrhoid. Totally gettimge down
I am so sorry to hear you are going through all of that. It is so difficult to stay positive when you do nothing but sit on a toilet all day. I do hope you stay to feel a bit better soon, although I know how it feels to never feel great, there is always some kind of pain.
I really sympathise with you as I've been a sufferer for 50 years. Are you suffering from a food intolerance such as Dairy or yeast? Have you tried the fodmap diet? I cant eat any fruit and only carrots or spinach as veg.After the first 7 years of suffering your symptoms I discovered I was dairy intolerant. I cut out all dairy/lactose/whey powder and it was like a miracle, everything cleared up within 3 weeks. There were still some things i couldnt eat such as nuts, lentils and seeds, figs and dates etc but nothing I didn't miss. If I ate them I would really suffer like you. Over the next 20 years I would get bouts of sickness , cramps and diarrhoea and not know why but it was due to eating something that my intestines just didn't like. Then suddenly I started to develop food intolerances and the real, awful IBS began. Just like you I was in and out of the toilet constantly. I was trapped in my home for years. All tests were negative. I had a colonoscopy and saw that my colon was perfectly clean and nothing nasty in there. I had also lost my sense of taste. I then discovered that the Omeprazole I was taking fkr acid reflux was causing so much pain. I stopped and gradually got my taste back and the agonising pain stopped. So medications can make IBS worse. I have lots of intolerances now which I have to avoid. My diet is very limited but at least my tummy cramps are very slight and controllable. I still get toilet urgency and need the loo straight away which still means trips out are a nightmare. Im in my 70's now and try nkt to be depressed. I hope this helps.
Thank you. That is good to know as I have also been given omeprezole for acid reflux. Its very difficult with the diet, I have tried so many different thing but it just seems so random. I can eat a meal one day and be great and eat exactly the same another time and be really ill. I keep trying to cut out different foods but there seems to be no logical issue.
I have read on this forum that quite a lot of people have problems with Omeprazole (PPI'S) and other medicines similar to it. Try Cimetadine or fomatadine instead. Sometimes it's very difficult to pinpoint an intolerance especially when it's just an Ingredient in something. I am highly allergic to Dextrose or maltadextrin and dextrin. I am intolerant to dairy and yeast and cant tolerate sunflower oil. All of those things are practically in every thing! The only way is to do an exclusion diet. Its hard to do but stick to just a couple of foods for three days. Then see how you feel, if you still get pain, change those foods until you find s couple of things that don't give you problems then add something each day until you find out what you can't eat. Leave fruit until last. Oh and don't eat onions or garlic. They are a big no no. See how you go.
It sounda like you are have a bad time .I have had stomach problems for the past 62 years also like you had cameras at both ends and scans the first time when i was 20 i had a burst ulcer and vomited a load off blood etc but in them days things were a lot different by the time igot checked out my stomach had heald itself but ever since i have suffed with my stomach.I hope things get better for you in the NEW Year
Hi WinkeI am amazed the hospital cannot offer any help. Have you tried a friendly bacteria known as probiotics, which encourage a healthy balance in your digestive system,
boost immunity and increase resistance to infection. Lactobacillus acidophilus aids digestion and keep the intestines clean. I also find peppermint tea and Aloe vera juice very beneficial to stomach ailments .
So sorry to hear about this. I know how you feel l am ruled by my ibs and always worried about making plans as usually l have to cancel. Had to cancel today as l feel awful and just staying in. You're not alone and it's a dreadful complaint. Regards Janet
Have you been to see consultant? I have been to A & E several times with inteanse pain, they treat you like youare a nuisance and just do basic bloods and obs ,maybe an x ray if they are clear they just kick you out. NO empathy or sympathy, if you're not dying they don't want to know
I have seen the gastro consultant but they done the same as you mentioned. They done a few tests that were negative and so no longer seem to care. There is no urgency from anyone to try and help.
You did not say whether you have ever had a colonoscopy? To be honest, this is the only way you will find out if it is IBS or something like IBD - if you have had a recent colonoscopy then you know for sure it is IBS and not something like colitis..I had similar symptoms on and off 20 plus years - tried different 'diets' etc and okay for months sometimes but then it would flare up again. Stress does not help as there is a definite brain-gut link so it is a circular argument!
If you can afford to see a gastroenterologist just do it. They will more helpful than your GP and will make suggestions to help. I did this a few months ago as was at the end of my tether; had a colonoscopy (through NHS shortly after seeing consultant) and found out I have colitis which I would not have known otherwise. I will add that there is not meant to be a link between having IBS and going on to getting some form of IBD so maybe in my case it is just one of these things...
I am also struggling mentally and am hesitant to stat SSRI's as I am sensitive to meds but may have to do this to have a better quality of life. In your case, if you still feel low on the meds you take then see the GP about what else they can do.
It's so unfortunate Western Medicine doesn't have a solution for IBS just medications that suppress the symptoms, as an African, I have seek help with African herbal medications and the result has been magical, in just five days of using the herbal preparation, it got rid of my most terrible symptoms, this is my second month and I'm feeling fantastic
Have you looked into the Low Fodmap diet? This has been recommended for Ibs. I'm planning on trying it very soon and seeing what my results are. Right now in trying to fix an ulcer and when that clears I will do fodmap. There is free apps for it. In the meantime, I put my trust in God, with praise and worship, Bible studies and church. All of thus has help keep me strong in my mind and spirit, and takes my mind of my physical side by focusing on something else. I truly believe God will pull me through. I have to remember all things happen in his time according to his will. When it happens like that it will be perfect. I will pray God gives you strength and comfort to endure this and your healing comes speedy. Hang in there, God bless. Heal me, O Lord, and I will be healed; save me and I will be saved, for you are the one I praise." ~ Jeremiah 17:14
"Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven." ~ James 5:14-15
So sorry you're having to go through this. It's been 30 years for me and I'm amazed at the treatment people get. I've basically had none. Luckily I saw a Locum GP who referred me to the NHS Pain Clinic who talked me through my issues at length, had me attend zoom meetings/classes. This clinic has asked GP's to refer me to certain clinics. The clinic also deals with my medication and a year later still touches base with me every 3 months and I can call or email them anytime. You can tell them who you think you should be referred to also.
Ask your GP to do this referral ASAP so you can explore, understand and have some control if your life, your IBS and your healthcare issues. I hope you keep us informed. All the best 😍
Hi Roary4, I’m so sorry to hear about the difficulties you are having and I can relate to them. Once diagnosed with IBS I asked for a referral to a dietitian. Best thing I did, she listened and offered long appointments, she referred back to my GP for various tests they should have done that then got done and she recommended FODMAP. This was the game changer for me, she spent ages going through the diet with me and then supporting me through the elimination stage etc. I would always say if you are going to try FODMAP don’t do it without the support of a FODMAP dietitian. I tied without support and failed. Prior to this I lived on fishfingers and lost a huge amount of weight in a very short period of time.The diet quickly showed up my intolerances, once I had completed the elimination phase. I still get periods of pain but I can now identify why. I also get periods of urgency but I am better able to manage that now too.
I really hope that things improve for you soon and wish you all the very best.
Hi, I’m also a sufferer...it’s a drag, but I’ve learned not to get me down too much and manage traveling or important things with diacalm. It may be useful to ask your gastro doc to check for Bile Acid Malabsorption (BAM) they can do a test...google it and see if you relate to symptoms, if it is this there is medication that may help. Take someone with you to see GP & Gastro Doctors...it really makes a difference and they can’t brush you off/dismiss your symptoms when there is a witness, it’s been helpful for me. Good luck and really hope you find a solution 🙏🏽
You have my true sympathy, it's a rotter of a complaint .After suffering for 4 years and having had all the tests, seen expensive private Gastro s, private clinical psychologist, private nutritionist, plus more, I am still in agony. GP says he can do no more for me but next week I have an appointment with a hypnotherapist (they call themselves the "dumping ground"_meaning people have tried everywhere else to no avail. I'm hopeful that these sessions will be of help to me as I often feel suicidal and have no life. Has anyone else tried hypnotherapy sessions i wonder?
It was just a lengthy initial phone call. He has a plan. Low fibre diet for 4 weeks. change of medication and hopefully a course of hypnotheapy. As I am out of Manchester area, funding will be required by the commissioners in my area. so it's whethe our GP's will pay for the course. If not, they could do it privately. Anxious to get going as it is supposed to have a 70% success rate.
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