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Lost and in need of advice


Fri, June 14, 2024 8:17 AM

Hi there. 


I don't even know how to make this short but I'll try. I'm not in a good place after another pointless doctors appointment. Back when I lived in Scotland I was suscpected of having small bowel crohns after being so unwell for years with all the symptoms of crohns the main one was pain when pooping and soooo much mucus. This was after a raise cal protein test of 180 and other blood markers being raised. I was pregnant at the time and put on steroids so it was also difficult trying to be tested/treated as was carrying. I was extremely sick to the point I almost lost my life as well as my daughter due to dyhdration and malnourishment, she was born by emergency c section at 32 weeks and thrived ever since. The steroids were super effective at first but it's like they would work for a short while and then the cramps came back during bowel movements as well as tons and tons of mucus. After finding out I'm lactose intolerant I believe that's what was causing the problems with that. 


As my symptoms were all mainly based around pooping the docs thought it was a GI issue especially with the FC test and raised markers, I however wasn't 100% convinced and learned about endometriosis. I pushed for testing for that and it turned out I did have that and all involvement with the GI ceased and I was in the care of gyne. After 2 surgeries I'm in a much better place with that condition so started working on putting weight on. At that point I wasn't in any pain and could poop easily and pain free. 


I started eating bacon and egg sandwiches daily and saw the weight quickly pile on. However 3 hours around eating that I'd get really bad cramps that would stop me doing what ever I was doing. I figured out it was eggs and stopped eating them. Then I asked to be tested for lactose intolerance and that came back positive so cut all lactose out. Eating meat, I would substitute daily products with vegan products and noticed I go insanely sick again. I discovered I couldn't eat eggs, lactose, soya, palm oil, spicy food, processed food, so many fruits and vegs. It's easier to tell you what I can eat; chicken, skinless potatoes, broccoli, an eggless lactose free biscuit, rice, eggless pasta, bread and ham. That's what my diet comprises off and I have the least amount of pain during BM and in between. 


I never really went back to find out why all this happens but after my Endo flared up and I kept getting big cysts on my ovaries so was back at the doctors and ended up in hospital a couple of times due to them bursting. During the Endo flare my bowels went crazy and started producing insane amount of mucus. I can't pass stool until the mucus is out. I'm now only able to use the bathroom with the help of a really hot water enema which breaks up the mucus. 

ive had several colonoscopies always showing "something" that should be looked into further but it never really has gone any where. My GP send me to the GI who did a FC and bloods. My FC was 27 and vit d and b12 were low. Because of the FC they have written off all possibility of crohns and just told me to stop drinking cola which is the only safe drink I have after testing everything. I believe I do have small bowel crohns which is why my FC was normal this time. I also feel that because I'm barely eating that will have an effect on FC levels as well as the fact I restrict my diet and when I got the 180
result I wasn't restricting just not eating a lot. 


I'm still unable to work or do anything as I wake up have a BM and am left in pain for hours rolling around on the floor. I take pain killers, go back to bed and depending how much stool I passed do it all over again when I wake up. I'm scared to eat because I know it's gonna come out and hurt so much too. I've been telling the d

FPO Bella
Joined Jun 14, 2024

Sat, August 03, 2024 6:39 PM

Reply posted for Bella.

I’m really sorry you’re going through this. It sounds incredibly tough.
Your determination to manage your health is admirable. Keep pushing for answers and advocate for yourself.
 

FPO Benjamin McLean
Joined Jul 8, 2024

Fri, August 02, 2024 3:29 PM

Reply posted for Bella.

Bella, I am sorry to hear of the challenges you are facing with your symptoms and diet. If you have not yet been given a diagnosis, and have undergone numerous tests, it may be important to consider a second opinion from another gastroenterologist. While you may not have an official diagnosis at this time, we do hear of many patients having to seek a different medical opinion to understand what the underlying concern may be.

Seek another opinion, and if you are concerned that you may have Crohn's or ulcerative colitis, talk to the doctor to ask if those diseases have been ruled out or what other tests might be needed to address your symptoms.

Beyond a diagnosis, it sounds important to also ask what can be done to treat your addominal symptoms, and a consultation with a dietitian might also be beneficial. 

If it is helpful to you, here are the common symptoms of Crohn's disease and ulcerative colitis, but please be sure to talk to your doctor to seek medical care to address your specific situation. 

When to Take Stomach Pain and other GI Issues Seriously | Crohn's & Colitis Foundation (crohnscolitisfoundation.org)

FPO administrator
Joined Oct 12, 2017

Thu, August 01, 2024 3:50 AM

Reply posted for danielkyler.

My best wishes to the author as he keeps looking for ways to get well and go back to his regular life as soon as possible.

FPO Adeliuse
Joined Jul 22, 2024

Thu, August 01, 2024 3:49 AM

Reply posted for danielkyler.

My best wishes to the author as he keeps looking for ways to get well and go back to his regular life as soon as possible.

FPO Adeliuse
Joined Jul 22, 2024

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