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Please Help, I don't know what's wrong with me


Mon, July 27, 2020 7:19 AM

Hey, 
First of all thank you for reading this because I'm honestly at a loss at what to do and have found myself on your amazing forum.

So I've struggled with digestive issues for years and, to cut a long story short, it seemed to get better until about 4 months ago... I've now had diarrhoea pretty much all the time that I go to the toilet for 4 months now. I already eat gluten and milk free (started a few years ago) as I thought this might have been the cause, however its still going and no matter what i do it continues...

Now that the doctors are somewhat open again I've had a stool sample done (normal) and a blood test which tested for things like anemia, thyroid, general bloods and I think inflamation as well...they've all come back normal. 

I feel constantly tired, headaches, sometimes blood in my stool, abdominal pain, I have to go urggently to the toilet around 6-8 times per day and sometimes in the night as well...

Someone please help, if you have any advise at all that would be amazing...this is physically and now mentally draining me and I have no idea what to do because there is something happening but I don't know what and no one seems to be able to find anything :( 

What should I do? 

Thank you!

Mair

FPO Mair
Joined Jul 27, 2020

Sun, January 03, 2021 1:12 AM

Reply posted for Mair.

Add a pro/pre biotic 
protein only diet- shakes breakfast & lunch
chicken or fish for dinner while in flare
fresh ginger tea 1 cup in the am and 1 cup in the pm helps create productive solid movement. 

this works for me
after flare calms can introduce green veggies etc 
needs to calm 

FPO trish
Joined Dec 18, 2010

Sun, November 08, 2020 7:09 AM

Reply posted for Mair.

Hi all,

Thank you so much for all your replies, it really means the world to me! Just an update as when I posted this chat both doctors and myself thought I might have some sort of IBD, however I had a colonoscopy which came back completely clear and therefore ruled out IBD. Although I was happy to not have IBD, I was also devastated to still not know what was wrong.

I went back to my doctors as I was still on codeine everyday for the pain which only got worse as well as blood in my stool, diarrhoea ect. My doctor (not using him again) straight up refused to investigate further and told me he wouldn't prescribe anymore codeine as he thought it was IBS. I called back and got a female doctor who was lovely and spoke to me about the options, agreeing to prescribe more pain relief in the meantime.

My lovely boyfriend had researched into other options as soon as nothing came up from the colonoscopy and decided to try and get me a laparoscopy, so he found a gynaecologist for us to go and see at a private hospital. 


Long story short, I saw the gynaecologist who thought I had endometriosis. Bare in mind, I saw a gynaecologist about the possibility of this yearssss ago, but he told me I was allergic to toxins released during the period (which I have since found out is not true and not even something that can happen). 

I had the laparoscopy 2 weeks ago and they did find endometriosis of the utero-sacral ligament in the pouch of douglas (which is between the womb and bowel and so could explain the diarrhoea) which they removed. 

2 weeks later I'm still removing from surgery, the pain has started to come back on the right hand side which I'm hoping is just due to bruising but I'm nervous about that. 

However I am so happy to at least have some sort of answer and to be able to (hopefully) be pain free for at least a few years (as endometriosis does grow back).

Thank you for all your help! This is a lovely community and I just wanted to post an update for you all and for anyone who might be in the same position as I was! 

Don't give up! 


 



 

FPO Mair
Joined Jul 27, 2020

Fri, November 06, 2020 8:13 AM

Reply posted for Mair.

Hello, sorry to hear about your suffering. I suffered for 20 years with colitis from the age of 20 to 40. I'm now 64 years old and noticed every time I picked up something heavy my colitis would flare up. I finally figured out it was discs in my back and neck that we're getting crushed cutting off nerves to my colon. Of course everybody is different. I hope you find your root cause so you do not have to suffer anymore. Blessings Stan

FPO Stan232
Joined Nov 6, 2020

Wed, September 09, 2020 5:23 PM

Reply posted for Mair.

Hi Mair,

When my UC flares, my blood work always comes back normal as well.

And you said you did a stool sample - did they do Calprotectin and C-reactive protein (CRP)  as well a fecal occult blood?  Also has anyone checked you for C-diff?  

Even if all that came back normal, your symtpoms are not something to "just deal with".  So I agree with the others about a second opinion.  My first GI dismissed my symptoms and said it was just IBS.  Fast forward 3 months later and I am in the ER having an emergency coloscopy and was then diangosed with UC and I had a wonderful 1 week stay in the hospital. 

I would also Google "IBD Centers" near me or "IBD Doctors" near me.  Try to see an IBD specialist, not all GIs are well versed in IBD care.  Usually big Hospitals like Mayo or UCSF, etc have IBD Centers or Digestive Disease centers.   Those people will be better equipped to help than just a regular GI.

FPO YogiKat
Joined Sep 9, 2020

Fri, September 04, 2020 8:21 AM

Reply posted for Mair.

Hi! 
I can relate to you a little. I was also having stomach pain and such and the doctors did little to help. My advice would be getting another opinion. Go to a couple different doctors and find one that will help you figure everything out!

FPO SmallGurlat14
Joined Sep 3, 2020

Sun, August 09, 2020 4:17 PM

Reply posted for uclife11.

It's important to establish a good relationship with a doctor you can trust and will stop at nothing until you feel well again.  The ccfa doctor database is a great place to start but always check the reviews. Also, check with friends or family who like their doctor. It could be that you find an amazing general practioner first before finding a specialist that can help. 

You deserve to feel well again, but it is a process of finding the right doctor or doctors, getting the right tests and finding a treatment that works. 

In the meantime continue to tweak your diet, excercise and stay mentally fit to help you cope with your ongoing symptoms. 

Wishing you the best! 




FPO uclife11
Joined Jul 24, 2020

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