Hi,
I’m 25 and I’ve had problems with my digestive system for eight years now. I’ve had many many MANY tests and I was told I have IBS. I have now moved out of my town and my new doctors believe it is more like crohns. I am in agony 24/7, heartburn is out of control, I bleed profusely when I go to the toilet. My symptoms are slowly getting worse and I no longer know what to do.
I feel very depressed and alone.
So sorry lilrose92 quite understand why you are so sad. If your new GP thinks its Chrons he/she should act and get a confirmed diagnosis as this is an IBD which is totally different from IBS and is treated differently more importantly any bleeding when going to the toilet should be investigated. Go back to your GP and get yourself sorted. Good Luck
Thank you for your help,
My doctor set up for me to get tests done on Monday so it’s quicker for me. My anxiety is at an all time high 
thank you 🧡
If it is chrones disease, you need to be under the care of a reuhmatologist. Chrons disease can be diagnosed by a rheumatologist and, while not a good diagnosis, it is definitely treatable. I have a close relative with this disease, so know a bit about it.
Oh ok I didn’t know that, thank you and I’m sorry someone you know is dealing with it . Thanks for the help🧡
I am feeling for you greatly, lilrose!
i agree with linley & b1b1b1, and i have a lot of experience of Crohns & Crohns-like signs + symptoms. Here is why:
My dear husband of 30+ years and his sister both have severe early onset Crohns which started when they were in their teens. We’re all getting on now, and are in our 60s-70s. My husband & his sister’s Crohns was managed closely by their gastroenterologists. I cared for both of them as & when needed. They have both led active, happy lives despite Crohns, and they are now enjoying old age. My husband’s Crohns went into remission over 10 years ago!
I have primary infant onset lupus, along with the many multi-system secondary illnesses lupus patients tend to get. My nhs care is led by my rheumatology & immunology clinics. Like you, i have had many many investigations over many years, starting when i very young. These tests etc include gastroenterology investigations into my chronic childhood onset mouth to a** GI Tract gastro probs, as well as into other stuff of all kinds around my bod. But, like my early onset severe Crohns husband & his sister, i have been able to lead a full and happy life. Now gastroenterology, rheumatology & immunology think i too have Crohns...this is after a lifetime of doctors telling me i had IBS-like signs & symptons.
after 3 years of investigations into what’s up in my abdomen by various clinics i attend at my big NHS university hospital, gastroenterology is now treating me using NHS Crohns care protocols (special diet & meds). These Crohns care protocols are helping me to feel a lot better while gastroenterology, rheumatology & immunology investigations continue. Of course, my husband & his sister are kind of shocked: what a coincidence! Even i can’t help having a laugh at this weird Crohns coincidence!
All this is why i’m relating to your post a lot! I am so sorry you’re going through this too, but am relieved your doctor is acknowledging you need to be investigated for Crohns right away! Courage, lilrose! This wonderful forum is right by our sides: we are not alone! We can survive all this and lead happy, healthier lives
Take care dear...i hope you’ll let us know how the investigations go on monday...what type of tests are you having? Later this month gastroenterology has me undergoing yet another test: CTE (CT Enterography: a type of scan that can see inside the small bowel where Crohns most often is active. Whereas Colonoscopy can only see inside the large bowel and gastroscopy can only see down the upper GI tract to the stomach...you probably know that colonoscopy & gastroscopy can find evidence of Crohns in these parts of the body, but Crohns tends to affect the small intestines most). Recently gastroenterology gave me a VCE (Video Capsule Endoscopy) which also looks for Crohns in the small intestines, but the VCE investigation was “incomplete” due to “capsule retension” caused by my chronic slow transit dysmotility constipation)
Wishing you every best wish
🍀🍀🍀🍀 coco
Hey,
Thank you for the reply and support I’m sorry you and your family have had to deal with crohns for so long but I’m glad you’re all getting the help you need!
Tomorrow I’m going through an “a&e” type situation and having all my bloods done I don’t know what tests will be done other than that but it’s basically so I can get my foot in the door to see a gastro quicker. I just pray it moves along fast and smoothly.
Thanks, lilrose. I hope the help you get tomorrow at hospital helps the doctors to “get a better handle” on your case...and that this leads to convincing diagnosis & effective treatment. 🍀😘
Thank you 🧡
How’d it go at the hospital lilrose? Have been thinking of you, hoping things went the way you’d hoped they would...and that investigations into the causes underlying your GI tract illness are continuing promptly...🤞🍀😘
Hey,
It actually went awful 😓
I had blood tests down through and they said my white blood cells were low (have been for a while now) I was supposed to have an X-ray but that didn’t happen.
My doctor forgot about me and I was waiting for results for six hours (!!) only to find out these tests won’t help me get a quicker appointment like my GP told me.
I’m disappointed atm 😩 thank you for checking in on me 🧡
Am so sorry!!!!! It’s REALLY extra hard for patients like us when the medics cannot see their way to moving faster with investigations...
eg mine have taken 3 years EVEN though i have a long NHS documented history of inflammatory process active in my GI tract...but last spring when i started projectile vomit8ng+diarrhea+became unable to tolerate food by mouth ongoing, gastroenterology speeded investigations up a bit & prescribed enteral feed8ng & admitted they are now treating me with Crohns patient care protocols which are help8ng me feel a lot “better”
Sorry: not a very comforting reply...except i do want to encourage you to hang on in there ...i believe you are a very self aware, determined woman who knows how to communicate effectively with the NHS...and i feel sure you will get the help you need...and in the meantime: i’m glad you’re here 😘🍀😘🍀😘,
ahh I’m so sorry to hear you had to go through all of that but I’m glad you got your diagnosis in the end! Wish you nothing but luck with this awful condition.
It’s hard sometimes it feels like I’m talking to a brick wall when it comes to the nhs, it’s been eight years and it’s really becoming tiring lol.
I don’t mind it not being comforting I’d rather an honest answer from someone who knows exactly what it’s like and has been so brave with their own experience.
Aw thank you I really appreciate it, I’m trying 🧡
Take care dear...we’re here for you...😘🍀
Bless you and hope and pray you get good treatment and all the help you need to get a proper diagnosis and appropriate help. x
Thank you so much 🧡
Hi lilrose92, are you on meds like Ezomeprazole (or some other ‘ole’)? I was having indigestion problems and those helped me. The bleeding could be caused by the IBS making your poo compacted and cutting you on the way out. When I had similar issues, I had to have something to loosen my poo and allow my anal canal to heal. My doc also said that all the wiping with normal toilet tissue could be causing bleeding and to try something like baby wipes. I now use Cushelle as it is soft and then use Andrex wipes which are normally on a special price somewhere in one of the supermarkets.
My son has recently been diagnosed with Crohns and the best way (IMO) to get that confirmed for you is to have an endoscopy and colonoscopy as they will be able to see the inflammation.
Hope this helps and you can begin to feel better mentally. Having IBS or Crohns can be tough but having the right people around you and the right support can be the difference.
Hi,
I’ve tried a lot of tablets for IBS that never made a difference.
Atm for pain I’m on amitriplyine (sp?) and cocodamol.
But now because it might be crohns im hopefully gonna get the right medication I need.
I had both endo and colonoscopy when I first got sick but no doubt I’ll be having them again.
I’m sorry you and your son are going through this, I wish you the best and thank you for your help 🧡
I am so sorry you are going through so much pain. I too am going through issues with chronic runny tummy (esp in mornings) and bleeding. I went for a colonoscopy two weeks ago and am awaiting results of the biopsy they took. I dont have the pain or heartburn that you suffer just low grade tummy cramps associated with the diarreah until it stops (sometimes i can run to the loo 10 times in a morning and its debilitating as I cannot leave the house). Please keep us informed about the progress with doctors and you are not alone.
Thank you for your reply, I’m sorry to hear you’re going through that and I hope you get it calmed down 🧡 I will definitely let you all know how it goes on.
It sucks but coming here has made me feel less alone. My family are there for me but of course they don’t understand what it’s like. Thank you 💜
Good luck lilrose92 with your tests I have had ibs d for 40years and I have got 6of my family with crohns so I no quiet a bit about it. and they are all managing it so don't worry will keep my fingers crossed for you xx
Sorry to hear that. However, if you had crohn's, you'd know it! One of the tests would have picked up on it, or at least your colonoscopy. IBS is a terribe DISEASE. And I say DISEASE, because I believe it is more so than a silly syndrome. Every person is so so different with this. I wish it were treated more seriously. I was diagnosed with post-infectious IBS after my battery of tests were completed with nothing out of the norm except my calprotectin. At it's peak and my feeling the worst, my test results came back at 480. Normal range is 50 or less. One month later, I was tested again and my results came back at right around 50. That's it, that's all it took for my diagnoses. Don't worry yourself sick. The more people I talk to, the more people I find have IBS of some level. It's crazy, and it's not just you. Welcome to the club 
Couldnt put it any better myself. I have had IBS for over 25 years. In and out of hospital with it most of my life. It is now been diagnosed as chronic and this "disease" is so debilitating. I wouldnt wish it on anyone and is so underestimated!
Advice please- I’m fed up!! 
I feel like I’m dying.
Hi I’m new here!
I’m a newbie
I’m not sure I can take this anymore!
