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Waiting for Gastro but still suffering symptoms - Please advise

Hi all,
Ill try to keep it short and to the point, but I've had a horrible two months

August 10th I fell quite ill. I was at a festival so at first GP assumed food poisoning, my symptoms were diarrhea (which became bloody after a week), vomiting, sweats, weakness and fatigue. My GP did stool samples which showed nothing, but blood tests showed signs of infection so I was given Ciprofloxacin.
I couldn't eat at all for 10 days, and I lost 22lbs in just under 2 weeks. I was treated at a&e for dehydration, which did ease my nausea, but still couldn't eat. They told me to stop taking the antibiotics because they suspected viral gastroenteritis, and told me to have actimel and probiotics. A few days later I was no longer vomiting, but diarrhea continued for another 2 weeks and I developed a blinding pain in my left side around my rib cage, I assume torn and pulled muscles from vomiting so much.

I returned to work on September 9th. I wasn't 100% and I was very exhausted still. All seemed fine for a week or so, just milk cramps and tiredness, but nothing like the weeks before. More stool samples were done and I was told my Calprotectin levels were elevated. Apparently a sample I gave earlier in the year was also elevated, but I was never told and nothing was done about it. I've been refereed to a Gastroenterologist just to be sure.

This Friday (20th) some symptoms seemed to return, very painful cramps (higher on my abdomen that before) and now it all seems to be returning. Cramps, diarrhea, bleeding, nausea.

I don't know what I can do in the meantime to feel better. I had a month off work and I was only back for 2 weeks and now I'm off work again and my employers aren't very supportive or understanding, and seem to think I'm lying because "food poisoning doesn't come back" even though I've explained 20 times that I'm about to see a specialist to check if I have Crohns or Ulcerative Colitis.

Any advice would be appreciated, if i should hassle my GP for more tests, go to a&e?
Thank you
2 Responses
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15695260 tn?1549593113
Hello and welcome to the forums!  Thanks for your question and we are certainly sorry you have been feeling so ill! This sincerely sounds like it has been horrific for you.  And I understand about the issues of maintaining your job which is so important.  You do have symptoms of ulcerative colitis.  https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326.  This has a symptom list that you can see includes Abdominal pain
Blood in your stool
Ongoing diarrhea that doesn't respond to over-the-counter medications
Diarrhea that awakens you from sleep
An unexplained fever lasting more than a day or two

However, a stool sample can also help determine if colitis is the cause and it doesn't sound like that panned out.  They may opt to do another stool test or colonoscopy which would be helpful.  I would also do blood work to make sure you aren't anemic which very well could be at this point.  I would ask for more testing based on your symptoms.  Remember that ulcerative colitis is immune system related as well so you want to make sure your doing your best to have a healthy immune system as well.

Something else to consider is irritable bowel syndrome. https://www.medhelp.org/gastroenterology/articles/Irritable-Bowel-Syndrome-IBS-Overview/233  Your symptoms seem like an extreme version of those you find with IBS.  

Have they recommended anything to address the inflammation in your bowels as shown through high calprotectin levels?  

Also, are you scheduled to see a gastroenterologist soon?  I would call them and see if you can move the appointment up.  They often have cancellations or can work someone in as your situation is currently at a high level.  So, I'd try to do that.

Please let me know how this goes.  
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6 Comments
Thank you for your response, I really appreciate it. I've tried not to google symptoms so much but to me also it sounds like either Crohns or Ulcerative Colitis.
I haven't had any stool samples done except for when I was very sick, which only was to test for food poisoning at the time, and then later to test for inflammation. I haven't had any advice on how to get by in the mean time, but thankfully my appointment has been moved to this week due to the stress I'm now under from fear of losing my job
Sorry you are going through such a hard time.  Have you had your appointment then?  Is there any update?
I have an update! I have sever Pan-Ulcerative Colitis, diagnosed after 200+ on a calprotectin test and ileocolonoscopy. I've been better for a month or so, been taking Pentasa and more recently started on Prednisolone 40mg. Due for a review soon, but I feel it's not quite right  as I'm still having a fair amount of pain, cramps, urgency (although finally no d&v), mucus and body aches.
correction, 2000+ on the calprotectin test*
Hi Chazzlet.  Thank you very much for coming back and updating us!  While I'm glad you have a definitive answer as to a diagnosis, I'm sorry to hear you have Pan-Ulcerative Colitis.  This is often called pancolitis and it is a chronic, sometimes lifetime condition. It usually involves the entire colon.  I'm sorry that you still have symptoms with the treatment they've started you on but are they any better than before?  That is what you want.  To make this manageable.  Other things that help are addressing lifestyle changes. Changing your diet to a colitis friendly diet, getting exercise, proper rest and reducing stress as best you can are all helpful.  Here is an article with tips about foods to avoid with your diagnosis. https://www.medicinenet.com/ulcerative_colitis_diet/article.htm  Surgery is something that is an option if you have a particularly bad flare or damaged area but I am sure that is not the path you hope to take.  Hoping that never has to happen but it is one thing they will do if necessary to give you relief.  It, unfortunately, does not cure the chronic condition, however.  You will need to monitor this and manage it as closely as possible as pancolitis puts you at greater risk for anemia and bowel cancer.  Please let me know how your review appointment goes and if they add any other medications.  A total cure would be fantastic, but keeping the disease manageable is probably the best goal to have currently.  Let me know how it goes.  
Thank you. There was talk of starting Azathioprine but I've recently fallen pregnant so I won't be taking anything new. Due to half my dose of Pentasa soon but I'm worried about doing that now that I'm pregnant and I haven't been able to contact my consultant
973741 tn?1342342773
Hi.  I was wondering if there is any update for you on this??
Helpful - 0
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I was diagnosed with pancolitis. I feel better now that I did even a month ago but still not quite back to my old self. Under investigation because I now have pains and "attacks" like when I had gallstones, but I've been scanned and I have no stones at all.
Oh, I'm glad you are feeling better.  All well?  
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