Crohns or just a severe case of IBS!?
Posted , 4 users are following.
Hi everybody,
Currently in another flare up and am struggling. I am 25 years old and have spent years at the doctors trying to get my stomach sorted out, am at my wits end now. I have a flare up every month and it normally lasts on average 16 days. It seems to be getting longer with each flare up I have.
My symptoms are - Severe abdominal pain all along the lower part of my stomach, this pain comes in waves about 5/6 times a day and is excruciating. The pain then causes me to have diarrhoea and throw up. I normally suffer with constipation and have done so all of my life, however when I am having a flare up, I can suffer from diarrhoea also. I'm on the toilet all the time at the moment and am throwing up just clear bile down the toilet every day. My lower back and hips absolutely throb and feel like they're physically being pushed together - this makes me struggle to walk properly and I find the only position that helps ease any pain is to crouch. I suffer with horrible nausea, sweats, high temperature and extreme fatigue - all I want to do is sleep for hours on end! Some months I have nearly passed out, the pain is so bad. I'm hardly eating as have no appetite either.
I visited a specialist yesterday, did a full blood test and gave stool samples in today - I did notice that my stools are very, very dark and have like a sticky, tarry consistency? (This was before I had another bout of bad diarrhoea!). She is putting me forward immediately for a Colonoscopy and an Endoscopy as I have had problems over the years with my duodenum area also so she mentioned about taking biopsy samples from the top of my stomach on the same day too.
I am slightly nervous about the procedures but know they need to be done. The main thing I am dreading is being told that this is JUST severe IBS. I don't think I could cope if it's just that. They have been brilliant and told me that whatever the diagnosis, they will help me through it. However, I feel that this is more than just IBS. I am on my 8th day into my flare up now and will probably still be suffering on Christmas Day. It's forcing me to cut my hours right down at work as I find my self either stuck to my toilet or my bed. I did take myself to A&E for the first time at the start of November when I had my last flare up but they wouldn't proceed with any tests etc as it's an ongoing problem.
Any information or advice - honestly anything would be very much appreciated! I have been reading some forums on here already and am trying to compare or piece together my symptoms with others.
Thank you.
0 likes, 3 replies
sophie98146 tammy271093
Posted
Hi Tammy,
I am 22 and have been diagnosed with Crohn's disease for just over a year now. I had been going to my GP since 2011 and finally after years of putting my symptoms down to IBS they finally decided to do a calprotection test which then led to a colonoscopy and MRI scan, a week later my diagnosis of Crohn's was confirmed. Since then I have been on steroids for 16 weeks (oral and IV), Azathioprine, Inflixmab, Mercaptopurine and a 6 week course of Modulen (liquid only diet) and nothing has improved my inflammation or symptoms. I felt I had closure getting a diagnosis however this past year has been my toughest. I found the medication very invasive and received nasty side effects (alopecia, skin condition, sickness, nerve problems) so I try to manage without. For pain relief I take buscopan regularly and sometimes Nefopam Hydrochloride when it gets too tough, it's important not to have opium pain relief (Dihydrocodeine, Cocodomal, Tramadol etc) at this can constipate you which isn't good. Don't be worried about the tests as you will hopefully get the answers you need and start the relevant medication, everyone reacts to meds differently too and even though the meds carry risks I thought that if I can live good quality life now then that's all that matters. I experience the same symptoms as you; pain 10 mins into a meal, gripes like what I can only describe as ringing out a wet tea towel, constantly at the bathroom, sickness, lack of appetite, joint pain, indigestion, pain lower right side going to the left (it just goes on) - and have had trips to the hospital but as you say there's nothing they can do, you're better being at home with pain relief and a hot water bottle. It's such a debilitating condition and times do get tough but try stay positive and don't let it have a hold on you. My diet is very restricted at the moment; no dairy, dark meat, fibre, spices, fruit & veg - very bland I know but hopefully when I do become stable I will be able to try these foods again. I have had another MRI recently which confirmed that treatment hasn't been effective but the good news is it hasn't spread, I have been given the option to try a new medication Humeira or have surgery to remove the damaged area and rejoin. I am also going to try reflexology as this apparently helps to manage symptoms and anxiety, my IBD nurse has recommended this.
I really hope you get the answers you need and can move forward to getting better, you're not alone and I'm always here if you need to chat. Take care xxx
tammy271093 sophie98146
Posted
Thank you so much for your reply, Sophie. I have private messaged you. 😊 X
lorraine77933 tammy271093
Posted
Hi Tammy
I also have crohns disease. I was diagnosed over 16 years ago, for 12 years I took medication to control my symtoms and occasionally had to use steroids to control a flare up. 4 years ago my consultant decided that my quality of life would be improved if I came off all my medication. I was not happy about it, but as he was my consultant, I assumed that he knew best. My biggest mistake ever. I had never required any in-patient treatment, in the first 12 years after my diagnosis. About 2 months after my medication was stopped, I had my first hospital admittance, it turned out to be the first of many. At one point I was on the ward for 4 weeks. I have since had many colonoscopies, endoscopies, mri, ct scans, capsule endoscopy and not forgetting the many trips to day medicine for infusions.
Like you, I now have a continual flare up. I go to the toilet up to 18 times a day, I am sick weekly and have no appetite at all. I lost my job, a job I had done for over 23 years, because I had to take so much time off. I am now completely unable to work and have no social life at all, as I do not like going to places when I dont know where the toilets are, if they are clean and if there are more than 1 available.
I have had infliximab, humira and countless other treatments, none of which have worked. This will be my 4th christmas that I have been unable to eat, I dont actually remember the last solid food I ate.
My consultant is now trying to tell me that my symptoms are more mental than physical, which is going to be my final straw. My calprotectin level has been in the high 900's for over 2 years now, but still my consultant tells me it is not my bowel that is the problem!!!
I am only 48 and do not want this to be the quality of life that I have left, so am seeking a second opinion in the new year.
Please do not be afraid of the tests you are facing, they are worthwhile if it gives you answers, but please believe that you know your body better than any specialist, and if you have questions, ask them.
I think that is where I went wrong 4 years ago.
I really hope you get the answers you need, and that you manage to enjoy some of Christmas.
If I can help you in any way, please ask?