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Help to diagnose if it's Crohns

:confused2:Hi I'm 35 years old nearly! And a mum of 3 small children. I have battled with lactose and wheat intolerances, acid reflux, constipation and panic attacks since I can remember, however about 5 years ago my symptoms took on some new characteristics and now I find i can't eat many foods without my digestive system flaring up, by flaring up I mean, burning gnawing sensation in my stomach usually just above my belly button. Sore irritated patch of intestine or duodenum to the right of my stomach, fist like feeling in my oesophagus and swollen sensation in throat which makes me feel like food is going to get stuck when swallowing. I am currently on medication on and of to ease the symptoms of these flare ups, the doctor has prescribed lansopraxole and Laxido, whilst feeling well and off the lansopraxole I tried to find a natural alternative to the Laxido that I was taking as I know it makes your bowels even more sluggish if taken for a long time. At which point I have been using it for 6 months. A friend recommended I drink a spoonful of blended kiwi in a glass of water each morning , the results were brilliant, until day 3 when shortly after my morning dose of kiwi drink I felt very nauseas this happened again the following two days but the nausea was more debilitating each time so day 6 I decided to have a break day 7 a bad flare up started I had gnawing section above belly button, pain in duodenum fist feeling in oesophagus, swollen sensation in throat and fatigue. This is so upsetting as the only thing that changed my diet was kiwi, now I've been back on the lansopraxole for a week and I'm still feeling awful. Could this be crohns? I got h pylori test results back today they were negative, I've sobbed all morning as I thought this could have been the answer to my misery. I'm seeing the doctor on Monday could someone tell me what tests I need to push for, for some resolve to these symptoms? I was tested for celiac disease last year and again results came back clear.
 

scottsma

Well-known member
Location
Tynemouth,
Hi, and welcome to the forum.It's very difficult for any of us to give you a diagnosis,nor is it right.The tests you MAY be offered are a sigmoidoscopy,OR a colonoscopy.These look into the colon via the rectum and look for inflammation and ulcers etc. Biopsies may be taken and sent off to the lab.Blood tests are another way.Calprotectin test the level of inflammation via a faeces sample.there's also MRI and/or Ultrasound.The list goes on.But first you're G.P will ascertain whether or not you need these tests at all.All of this takes a lot of time and patience,which in itself can be difficult.So just take one step at a time.I'm sure their will be others along with more help and advice.In the meantime you'll get lots of support on the forum.There are lots of threads to scroll through which will be of help.But we're all different,symptoms,tests,diagnosis,medication,diet etc........best wishes and please keep us up to date.
 
Thank you for your reply. At this moment in time I have such little faith in doctors, I constantly feel under pressure to self diagnose. Which is why I wanted a little information to take in with me for my appointment on Monday. It's not uncommon to feel like a hypochondriac, sitting in front of the doctor describing my list of symptoms! I will be back to let you know what's next for me.
 

scottsma

Well-known member
Location
Tynemouth,
I always make a list to help me keep my head clear.You can either refer to it yourself,or hand it to the Doc. and let him read it.(if it's in your best hand writing,that is hahaha)Don't let him/her bully you.Be polite of course,but be determined the get something done.You have little children to consider.You can't do the best for them when you feel unwell......Good Luck.
 

UnXmas

Banned
Is there a particular reason you suspect Crohn's? There are many digestive conditions out there, and I wouldn't say you sound like a typical case of Crohn's. You could tell you GP your current medications aren't working and see what he/she suggests. There are a lot of treatments for stomach problems that are better than kiwi!

If you've already had basic blood tests, your doctor may suggest a referal to a gastroenterologist (if that's not who your seeing already). It sounds like you have upper digestive symptoms, so it's possible you could need an upper endoscopy.
 

UnXmas

Banned
Just to add - please don't self-diagnose! I don't think patients should need to suggest diagnoses, tests or treatments to doctors. It's not up to patients. Sometimes you may come across something you think will help, or you feel you really really need a particular test, or there are different treatment options available for you to choose from, and it's fine to make suggestions, but in general patients should tell doctors their symptoms, medical history, etc., and doctors should do the diagnosing, testing and treating.

I've read a lot of posts where people say it's up to patients to provide a long list of tests that they should ask their doctors to do, or tell their doctors what illness they believe they have, but I don't think that approach works. If you have a good doctor, the doctor will know what it is best to do. If you have to tell your doctor these things, then you need to find a new doctor. Continuing a doctor-patient relationship where you don't trust the doctor enough to let the doctor make suggestions isn't going to work.

I would go to the appointment and stress how bad your symptoms are, how your current treatments aren't working, and how you really want to know what is wrong with you.
 

scottsma

Well-known member
Location
Tynemouth,
Just to add - please don't self-diagnose! I don't think patients should need to suggest diagnoses, tests or treatments to doctors. It's not up to patients. Sometimes you may come across something you think will help, or you feel you really really need a particular test, or there are different treatment options available for you to choose from, and it's fine to make suggestions, but in general patients should tell doctors their symptoms, medical history, etc., and doctors should do the diagnosing, testing and treating.

I've read a lot of posts where people say it's up to patients to provide a long list of tests that they should ask their doctors to do, or tell their doctors what illness they believe they have, but I don't think that approach works. If you have a good doctor, the doctor will know what it is best to do. If you have to tell your doctor these things, then you need to find a new doctor. Continuing a doctor-patient relationship where you don't trust the doctor enough to let the doctor make suggestions isn't going to work.

I would go to the appointment and stress how bad your symptoms are, how your current treatments aren't working, and how you really want to know what is wrong with you.
you explained things much better than I did,thanks.
 
Hi!

I think some of your symptoms are very like the ones I had after my second child was born - the burning sensations, epigastric pain, the lump in my oesophagus all the time, the difficulty eating, and even the occasional regurgitation of food when bending down to change nappies. It turns out I have a small sliding hiatus hernia which was diagnosed by endoscopy.
I now take a low dose of Omeprazole which has sorted it out (more effective than Lanzoprazole, in my opinion). Having three young children would make you a prime candidate for that as pregnancy pushes the stomach up and can cause a weakness in the diaphragm. I would try taking some Gaviscon (Gaviscon Advance Liquid was the best for me, available without prescription but quite pricey) and if your symptoms improve then you could talk to your GP about getting investigations to confirm things.

For the constipation I would suggest trying Fybogel, as it is a natural product and does not have any problems associated with long-term use. I have a family member who uses it and will have to do so for many years to come.
 
Thank you again I really appreciate your advice and comments. I have used fibre gel many years ago when I was at university and suffering so will look into this again. Does Crohns affect the stomach and throat? As well as intestinal and bowel areas, I'm pretty sure I have a few issues regarding my stomach and that I will need a endoscopy at some point soon. I've researched the hiatus hernia and Gerd, but it bafalls me that when I'm well I'm fine and then all of a sudden I'm taken down by an aggressive inflammation which which spreads so quickly from my duodenum to my throat, this time round it has taken my breath away as well as my energy, it's brought a really bad bought of the grumps to. I feel super sorry for my husband and three kids who have to live with me.
 

UnXmas

Banned
Do your husband and kids (if they're old enough to understand) know you're unwell? It's natural to be grumpy. You can make it up to them.

Crohn's can affect any part of the digestive system, so yes, it can affect the stomach and throat, but so can many other things, so don't worry too much about Crohn's at this point, when you've had few tests. (Crohn's usually causes a lot of diarrhoea, and bleeding is not uncommon either.)

When you say inflammation spreads from your duodenum to your throat, do you mean pain that feels like inflammation? If it's a gnawing pain from your chest to your throat, that sounds very much like heartburn and reflux (GERD, as you've been reading about). It can occur at some times but not others. I have heartburn and reflux, and sometimes it's awful and other times gives me no problems. Some people find it varies depending on what they eat. For me it's more likely to occur in evening and when I'm lying down, which is also common.

Have you seen the forum's support group for GERD? http://www.crohnsforum.com/showthread.php?t=62702

Again, this isn't always caused by Crohn's, sometimes no reason can be found for it at all.

An upper endoscopy is useful for assessing these types of symptoms, and might be what your doctor suggests. There are a lot of medications that can help control them too, so that's definitely something to discuss with your doctor.

Also, you said you have panic attacks. Is this on your medical record? Some doctors are more likely to dismiss symptoms as just "stress" or something psychological when they see a patient has a condition like panic attacks, and maybe that could be influencing how they're treating you - you said you're lacking faith in them? If so, it would mean it's even more important to find the right doctor(s) for you.
 
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Thank you again I really appreciate your advice and comments. I have used fibre gel many years ago when I was at university and suffering so will look into this again. Does Crohns affect the stomach and throat? As well as intestinal and bowel areas, I'm pretty sure I have a few issues regarding my stomach and that I will need a endoscopy at some point soon. I've researched the hiatus hernia and Gerd, but it bafalls me that when I'm well I'm fine and then all of a sudden I'm taken down by an aggressive inflammation which which spreads so quickly from my duodenum to my throat, this time round it has taken my breath away as well as my energy, it's brought a really bad bought of the grumps to. I feel super sorry for my husband and three kids who have to live with me.
Did you ever get this figured out? I ask because I struggle with a LOT of the same symptoms.
 
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