Hi Everyone, I have been sick since 01 March (3 days after my 35th bday) with bloating, gas, constipation, and severe weight loss (12kg/4months). I did endoscopy, colonoscopy, CT scan, all kind of blood test, etc. The only thing that come out was H Pyroli (which I was later cleared negative after the treatment ) and lactose intolerance.However I am still struggling and always stressed with the tough pain in my stomach which I still cannot figure out what causes it. 5 minutes after me, my stomach bloats and feel pin even in my chest and throat. I eat less than before and the weight loss continues. I have alternating constipation and soft stool (no diarrhea) and going to the toilet always reliefs the stomach pain.
I removed gluten from my plates since 3 weeks but no improvement rather pain continues. Two days ago I was admitted to the ER due to horrible abdominal pain, sweating, difficulty breathing, very weak but they did not find anything fatal and sent me home with Buscopan. Its a bit frustrating that no one seems to know what is going on and every morning I have to wake up and worry how my day is going to be. I am currently in medical leave and I would be glad if some you share your experiences if you had similar ones.
Thanks
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Tesb
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I feel the same as you! I suddenly got horrible cramping in early April in the top of my abdomen. Got prescribed Omeprazole for gastritis which didnt really help...switched me to lanzoprazole. It gave me heartburn indigestion and nausea so I went off that as it was making me feel worse! Two weeks later a private gastroenterologist put me on pantaprazole ...two weeks later I could barely choke down food
Blood tests all coming back fine ...still waiting for an endoscopy colonoscopy with NHS in meltdown here in Wales. I have no energy and am scared to eat anything. I am signed off work but my anxiety is getting worse as I always have aches in what I think is my descending and ascending colon.
Sorry I dont know the answers either just thought sharing might help. I think it is a vicious cycle though which I am having a hard time breaking out of.
Thank you so much for sharing your experience. I cannot support Pantoprazole it make me really sick and I usually get Omeprazole which is a bit light, so you may also consider that. Most of the pain is now in my lower abdomen but sometimes extends to the entire belly and going to the toilet often helps. I also observed that I have to eat the “perfect” amount of fruits/veggies so that won’t be constipated nor have diarrhea , Both hearts a lot!
Here is some information about IBS that I have shared with others in this group some of which you might find of assistance:
IBS can be due to a number or combination of factors - these can be stress (including stress from early life experiences) which impacts the communication between the brain and the digestive system. There are lots of free webinars online at the moment regarding mindfulness meditation which might help. Plus you can ask to be referred for CBT or something similar to reduce your anxiety - I would have thought online appointments are available. Exercise can play a major role in IBS in terms of reducing stress, helping your gut microbiome and regulating bowel movements.
There is also not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with IBS bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as pain or disordered bowel movements. There is an interesting infographic on this here:
This is why it’s worth trying probiotics such as Alflorex (which has been scientifically studied for IBS) or Symprove to crowd out the bad bugs and make their numbers die down. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app it will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with IBS don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. Last year all I could consume to control my IBS was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.
Since you are also suffering from pain, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:
It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.
You may also find assistance with anti-spasmodic medication such as mebeverine (Colofac) or enteric coated peppermint.
So sorry to hear you are feeling bad. I have confirmed IBS - d but no exact experiences like yours that said you have been fortunate to have had diagnosis tests completed quickly. I think the only thing we have in common is health anxiety and finding the right medication to control our pain. It took me a long time to accept that all these symptoms I was having was IBS and not related to anything more serious. I can only suggest that you try CBT sessions to help with the anxiety, go back to your doctor for another pain medication if Buscopan is not working, and if you symptoms change go back to your doctor to get yourself checked out. This is what I have done during my life with IBS. Good luck🍀
Hello, so sorry to hear how you are feeling. I was feeling exactly the same due to IBS symptoms since 2013. Like you I started off with H Pylori, with my symptoms escalating after they found a gall stone in one of my bile ducts. They then removed my gall bladder (doctor initially diagnosed me with me IBS, until a year later, when my symptoms become worse, that an MRI indicated I had gall stones.) After gall bladder removed, I continued with symptoms of vomiting yellow bile and in and out of hospital. After numerous tests, a consultant referral and my own research, I finally after 7 years, have had a result.
I cut out ordinary bread and only eat gluten free bread. Also find Rennie tablets helps to alleviate stomach gas. Also Colpermin for IBS is good.
After trying numerous medications prescribed and not prescribed, my medication daily is:
20mg Amitriptyline, this settles the nerves in the stomach.
1 cimitidine tablet, twice a day (for stomach acid) - Omeprazole was no good for me
1 colesevelam tablet, twice a day (for bile reflux malabsorption)
I have no side effects with these medications, apart from a dry mouth with the Amitriptyline after I go to sleep so I always keep a glass of diluted blackcurrant juice on my bedside cabinet.
Obviously, your symptoms differ from mine but there is a lot of research books on IBS D and IBS C which I found in the library. From these books, I was able to discuss with gastroenterologist and to ask on trying different medications.
My doctor was never helpful on prescribing medication so it is better to ask a consultant. Also, perhaps look at gall stone symptoms.
Good luck on resolving your problems as it’s a nightmare not knowing what is wrong.
Thank you so much everyone for sharing your experiences🙏
Yes I am considering some sessions for my stress. Currently I follow a once per week Acupuncture session which I found it very useful.
I am waiting for urine and stool sample results, which I don’t think that will show anything.
As I did CT scan and stomach ultrasound I don’t expect gallstones but will discuss with GP. I have a bit of suspicion that I may have SIBO considering my symptoms including rapid weight loss, andI plan to suggest to my GP next week.
Hi , I have had the same as you have been sick daily for 4months, I did a stomach emptying scan which was positive, but the medication they gave me has not done anything for me , have you done a poo test for inflammation , or the emptying scans , are you still being stick ? What did they give you if it’s stopped , the hospital said they will see me , not sure how long they will take !
No I haven’t done stomach emptying test yet. May be something to discuss with my GP. I did a stool test for inflammation and am waiting for the results. I am still very sick with horrific stomach pain every day and hoping to hear something helpful from my tests.
O dear ! I was on antiacid for 4 months , the endoscope showed I had a hiatus hernia and the dr recommended the stomach emptying , guys hospital have agreed to see me , they put me on erythromycin
Third day on it no change , still sick daily , but I’m sure they will get to the bottom of your problem ,, and mine !you should get a potassium level blood test , sickness can cause a lack of potassium , but easy to treat , keep in tipi he , good luck
Today I saw a gastroenterologist one of the best in Geneva and he suggested MRI for tomorrow and staying on low FODMAP. He Also gave me probiotics (pereneterol 250 mg) and Metamucil Regular to help with my symptoms. Any one with Metamucil regular and Perenterol?
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