Unsure what i have

[orionzbelt1]

In November i had a what the doctor thought was a urine infection so i was treated with antibiotics, the symptoms i had was cramping abdominal pain and the feeling of needing to go toilet both ends, this didn't clear up and the doctor tried some more antibiotics which still didn't relive the problem, i tried OTC painkillers but didn't find any of them to relieve my discomfort. My gp sent me for a ultra scan of the testicles as the pain radiated down there at the time, the scan came back all clear and was sent for a kidney ultra sound. all these test cae back clear and another abdominal ultra sound revealed nothing. I have had to deal with a lots of personal issues over the last year so i put my health on hold whilst sorting the problems out and started taking tramadol which masked my pain and i was able to function without being in discomfort. My partner was getting concerned as i was loosing weight rapidly and suffering with anxiety and depression and told me to go and get these problems sorted out so after another ultra scan which revealed nothing and a full blood test my gp called me back in to reveal that i have a B12 deficiency and would require vitamin jabs for the rest of my life at 12 week intervals.

I have had my loading doses of the B12, but do not feel any different after having them i still feel every day bloated and my stomach is in constant discomfort and i feel like im always trying to pass a stool. my cramping got to bad this week and i ended up at A&E and they have refered me for a CT scan and a colonoscopy. I do not suffer with diarrhoea but my stools are really loose and when i eat its as if i can feel every piece of food being digested.
My Symptoms are

stomach cramping
bloating
loose stools
fatigue
mouth ulcers
piles
weigh loss
night sweats
I had a all you can eat chinese a week ago and this came out completly undigested
Is this crohns?????

 

[DustyKat]

Hi orionzbelt1 and :welcome:

I am sorry tho hear of all going through and hope you soon have solid answers as to what is going on. :ghug:

All of the symptoms you have listed could be attributed to Crohn’s so you certainly couldn’t rule it out. Scoping remains the gold standard to a diagnosis as they can visualise the bowel and take biopsies. The only draw back is a scope can only reach so far which means a good 90% of the small bowel is left unchartered. It is good to see you have been referred for both a scope and scan as they compliment each other. Have your tests been scheduled?

Ultrasounds are very useful tests but in our experience unless they know exactly what they are looking things are often missed. Both of my kids had normal ultrasound results pre diagnosis only to have Crohn’s located in the terminal ileum and one of those ultrasounds was them looking for Crohn’s there!

I don’t know your age but there are very few reasons why someone would be B12 deficient and unless you have pernicious anaemia what did the doctor say?
Ileal Crohn’s would one of the other flags to a B12 deficiency or some other malabsorption disorder.

Good luck and welcome aboard.

Dusty. xxx

 

[Ronald]

You have symptoms pretty much identical to mine, but I'm also undiagnosed so I couldn't tell you if it's IBD just yet. I have an ultrasound booked for the 17th and I really hope they find something. Not looking forward to being told I need a colonoscopy if they don't...well if I do have IBD, I can't get out of that one!

I too have low B12 and was given cyanocobalamin to take orally - gives me terrible stomach cramps (more than normal anyways). Think I'm going to ask for infusions in the future.

 

[orionzbelt1]

Hi orionzbelt1 and :welcome:

I am sorry tho hear of all going through and hope you soon have solid answers as to what is going on. :ghug:

All of the symptoms you have listed could be attributed to Crohn’s so you certainly couldn’t rule it out. Scoping remains the gold standard to a diagnosis as they can visualise the bowel and take biopsies. The only draw back is a scope can only reach so far which means a good 90% of the small bowel is left unchartered. It is good to see you have been referred for both a scope and scan as they compliment each other. Have your tests been scheduled?

Ultrasounds are very useful tests but in our experience unless they know exactly what they are looking things are often missed. Both of my kids had normal ultrasound results pre diagnosis only to have Crohn’s located in the terminal ileum and one of those ultrasounds was them looking for Crohn’s there!

I don’t know your age but there are very few reasons why someone would be B12 deficient and unless you have pernicious anaemia what did the doctor say?
Ileal Crohn’s would one of the other flags to a B12 deficiency or some other malabsorption disorder.

Good luck and welcome aboard.

Dusty. xxx

Trying to book tests but hospitals are as usual busy so i guess ill have to wait in pain for a few weeks, my gp had stopped investigating as found the b12 at 114 and that was her conclusion to my problems lol

 

[DustyKat]

So she didn’t question as to why you are deficient? If you don’t mind me asking, how old are you?

 

[orionzbelt1]

I'm 37 on Wednesday, she mentioned pernicious anaemia but no further tests were being done until i went back and asked about my gastro referral then she submitted it , she had me down to have a follow up appointment in august for bloods to check my b12 !! and that it. dunno how long i can carry on with this, i have taken far too much time of work and have lost 2 stone is 9 months and i was only 12.5 stone and am taking tons of otc painkillers plus my tramadol

 

[DustyKat]

Ugh, how frustrating for you! I do understand how hard it is, as do so many here as getting a diagnosis can be so drawn out.

Many of the symptoms you have can be attributable to Pernicious Anaemia but to be honest I think there is too much going on in your lower down from your stomach to write things off as PA. I hope I am wrong mind!

Dusty. xxx

 

[Daisy123]

Sounds like you are having a bad time. Painkillers are a bandaid until you have your symptons investigated and proper treatment. Be careful with OTC painkillers. What ones are you taking? In relation to tramadol, I found the slow release more effective. You need to push for investigations.

 

[orionzbelt1]

Sounds like you are having a bad time. Painkillers are a bandaid until you have your symptons investigated and proper treatment. Be careful with OTC painkillers. What ones are you taking? In relation to tramadol, I found the slow release more effective. You need to push for investigations.

co codamol and ibuprofen im taking is there anything else that will help my stomach discomfort?

 

[DJW]

So sorry you're having a rough time. I've been told by my GI specialist to stop taking ibuprofen. I'm to take tylonal instead. Ibuprofen can cause gut issues.

Sending you my support. Hope you get answers soon.

 

[Daisy123]

As DJW pointed out it is not good to take ibuprofen with stomach issues. I would recommend stopping it. You are taking a cocktail which could make things worse. You need to get the problem sorted out. Is the referral for CT scan and Colonoscopy going ahead, I am a bit confused? The only other things I can recommend are buscopan which is OTC and meant to relax the bowel, and/or peppermint tea. I am on morphine but it is very short term and is not prescribed until a diagnosis is made and then is a struggle.

 

[orionzbelt1]

My CT scan came back clear and also the colonoscopy only reported vistual hypertension and the consultant ordered a mri and a endoscopy of which im still waiting for the results, This morning i had a very dark charcoal coloured poo and am really suffering with bad back and when i have a BM i have a burning sensation and then shortly after that the cramping will start which i can only describe as they feel like contractions where my bowel is filing back up.

Does people with crohns suffer with bad lower back and constant pressure in the lower abdomen

 

[orionzbelt1]

Anyone????

 

[Daisy123]

Sounds like it might be crohns. I get cramping and terrible low back pain. Hope you get your results soon

 

[BreakingCrohns]

No matter what it is the easiest thing you can do is to temporarily cut gluten out of your diet. I found that a gluten free diet help eliminate many of my Crohn's symptoms long before I was diagnosed.

I also experienced spasms like you describe which is likely due to irritated nerves in the colon due to inflammation.

Wheat and grains are the most inflammatory causing foods we can eat. I hope eliminating them can give you some short term comfort.

I hope feel better soon!

 

[orionzbelt1]

I wish I knew what foods are causing my discomfort or is ot the amount of food..How long roughly does it take your food to enter the small intestine after consuming it??

 

[DJW]

I'd suggest a food and symptom journal.

 

[BreakingCrohns]

There are many factors for the rate at which food travels from the stomach to the small intestine. For instance not enough stomach acid will cause the opening to the small intestine to stay closed longer.

At any rate I would suggest eating small meals more frequently and maybe even green smoothies to be sure you are getting your essential nutrients.