Help - Undiagnosed

[supermo]

Hi

I am new to this and hope someone may recognise any of my symptoms or situation.
I am a type 1 diabetic taking insulin and various other medications and for the past 8 months have been really unwell with stomach cramps, pains, bloating etc. I have had problems in the past with constipation and they diagnosed with IBS and gave me Mebeverine which i never really found that helpful. In Sep 2011 I was really unwell with glandulafever which then led to my current problems. I regularly suffer with haemorroids and pain when passing motions and sometimes blood. I have had various tests done, Endoscopy, Flexible Sigmoidoscopy, Ultrasound and MRI Bowel study.
I went to my doctor (no.3) yesterday and he tells me the Endoscopy showed gastritis, the MRI showed a slight back up of faeces and the flexible sigmoidoscopy was stopped due to it being extremely painful and uncomfortable. He seems to think i just have IBS but it feels more than that??? I have alot of spider Nevi marks so he is now going to carry out a more in depth ultrasound of my liver, vessels and nerves.
I take alot of medication as I have had a full hysterectomy 8 years ago, aged 30. Statins & Insulin for my diabetes and now he has prescribed Amitriptyline 20mg, domperidone 10mg and movicol. I did try Metroclopramide but had some adverse reactions to this.
I am really struggling with the pain, discomfort, tiredness, feelings of bad tastes in my mouth, bloated and generally horrible on a daily basis. It really is affecting me and i really desperately would like a clear diganosis. Please help if you can ??

 

[Catherine]

Sorry can't help, but Aura maybe able to.

 

[StarGirrrrl]

Hi Supermo, so sorry to hear about your troubles You sure have alot going on

Can I suggest you post in the Undiagnosed section of the forum and we can give you advice and support there :ghug:

 

[Dazzafarr]

Hello supermo,
It's a hard thing to be undiagnosed and the best start would be to manage your current symtoms as best as possible untill you do get a diagnosis.
For anal fissures or discomfort you can try using baby wipes and a cream called hydrozole.
Try changing your diet if you haven't already done so already.
Try be plain jane if you can as this can help with symptoms to some extent.
At the moment I am undiagnosed myself and have switched to mainly - fruits, veg, white meat and gluten free bread. This is keeping my stomach settled enough to deal with everything.
If you smoke - cut down or quit.
No-one on this site will be able to give you an idea of diagnosis as symtoms are quite diverse with this disease.
Best steps to help that I can recommend are first blood tests-
IGG,IGA, calcium, vitamin D, iron and a bone density test.
Other tests-
CT scan
Colonoscopy
Series "pillcam"

Unfortunatley crohns display different symtoms in everyone.
I hope you find a diagnosis soon

 

[supermo]

Thank you all for your advice

 

[supermo]

I have tried a gluten free diet but it didn't seem to help as they wanted to rule out Coeliac Disease.

 

[Dazzafarr]

I found that a lot of gluten free stuff still upsets me too.
I have restricted my diet to fruits,veg and white meats and gluten free bread only.
If I have anything else I get a lot of pain as well.
Everyone is different and being undiagnosed makes it harder again to suggest a diet that works for you. Generally the above helps a lot of people although it might not for you.
The only way to find out is numerous tests.
The ammount of tests I have done Blows my mind everytime I look at all the reports.
Each blood test leads you closer to direction.
Goodluck

 

[Dazzafarr]

My IGG test came back suggesting crohns however it is not a complete diagnosis.
The only true test is visual in coloscopys or biopsy.
If they don't find a cause with biopsy it doesn't mean you don't have crohns.
Crohns can affect your bowel in many or different areas not in reach of a colonoscopy examination. Generally suggested by your GI is a series "pillcam" to reach the possible affected area.

 

[Aura]

I am a type 1 diabetic taking insulin and various other medications and for the past 8 months have been really unwell with stomach cramps, pains, bloating etc. I have had problems in the past with constipation and they diagnosed with IBS ... In Sep 2011 I was really unwell with glandulafever ... I regularly suffer with haemorroids and pain when passing motions and sometimes blood...I take alot of medication as I have had a full hysterectomy 8 years ago, aged 30. Statins & Insulin for my diabetes and now he has prescribed Amitriptyline 20mg, domperidone 10mg and movicol. QUOTE]

Hi there
Welcome, it's great to meet you. Thanks Catherine for the link to :thumleft: While I am different you and I share a lot of the similiarites as well :biggrin: I am a type 2 diabetic on 3 x 850mg metformin due to being on 40mg pred at the moment. I have been diagnosed with crohn's but I am a constipated chronnie not a diahorrea one. My consitpation has tried to be sorted with movicol, metamuscil, benefiber - but they actually made my stools too hard. I now use lactulose normally I take one shot glass a day in a sugar free hot chocoloate. At the moment I have a severe flare so I need to do two shot glasses a day. While lactulose is a sugar it is non binding and goes straight through to the gut where it does make my stools soft enough to pass. This has managed the cramping pain (that hurts like hell); distention or compaction; anal tears and bleeding. Doing this I can poo nearly every day, instead of once every 3-5 days.

Yesterday day I was taking 26 pills a day and from today that now will be 34 and in a couple of weeks I will add in Humira injections. To manage I have pill boxes - well 3 of them for morning, lunch and tea. Under my coffee table I have a suitcase where I keep them all. When I travel on planes I take a letter from my doc incase someone opens my case and thinks I sell them :biggrin:

Getting diagnosed is hard it took me a year to get the CD Dx. Could you ask for a colonoscopy to be done? or have the swalloable camera in case it is located in your small bowel? I want you to know that you can be a chronnie with constipation and that not all of us have the runny d with it.

I also have PCOS and endometriosis - plus other health issues. At the moment with my flare I can feel crohns pains in three places and endo pain - they are all different and you will always know your body best. When you go to the docs write down your notes about your symptoms before you go in and leave them with your list in case you forget to mention it at the time. Make sure that they understand and listen to you. I said to mine yesterday "I need you to understand that I can not cope like this. I need help..." I like using the old "I" statement - it seems to get their attention.

Sorry for my longwinded reply - but I am here if you need to chat, albeit from the bottom of the world:ybiggrin: