New here and suffering daily

[Stephanie89]

Hi all, I started suffering about 5-6 hrs ago, went to my GP who referred me to Gastro but ended up waiting so long and my symptoms were just getting worse and worse so decided to go private. My consultant has been amazing, no cancer or obvious signs of IBD so he’s currently saying it’s just really severe IBS (I didn’t even get a day off the loo after my colonoscopy 😢 which I was looking forward to). Everything I eat seems to be a trigger, I’ve gone lactose free and even cut out tea and coffee 18 months ago but it’s just getting worse to the point I’m crying on the toilet some days whilst trying to rush back to work. I don’t have celiac disease, he tested samples so I’m really stuck on what I can eat/should try next, I’ve tried the MODFAP diet and even that didn’t have any effect. I’m giving up with this chronic diarrhoea now and just need some help.    

[Jeffrey Roberts]

Dear Stephanie89,

I'm so sorry to read your story. Did the "consultant" offer any treatment options? Have you ever tried loperamide (imodium) or lomotil for the diarrhea?

You didn't mention abdominal pain. Are you also in pain and if so, does the pain go away after being on the toilet?

There are unfortunately few treatment options in the UK for diarrhea. Diet only seems to work for 40-60% of people.

I would recommend you talk to your GP about trying a low dose antidepressant which acts as a anticholinergic medication. Using a tricyclic will slow down your bowel - but it takes a few weeks to kick in and there are side effects. If they are unwilling to do that, some doctors are now using ondansetron to manage diarrhea. It's a medication normally used for nausea with chemotherapy. You can start at 4mg and work up to 8mg daily until it slows down your bowel.

Please let me know if you have any questions that I have answered or asked.

[Stephanie89]

Dear Jeffrey,

Thank you for your reply, my consultant is making me an appointment with a dietitian and has actually put me on ondansetron 4mg to try (I started them on Monday of this week so keep your fingers crossed for me). I have to take Imodium instants (only the instants seem to absorb/work) if I want to leave the house for more than an hour so I take it semi regularly anyway.
 

My GP had me on amitriptyline 10mg for a few months this time last year but it made no difference except making me feel like a zombie so going up to a higher dose was out of the question for me and my GP is pretty useless, they don’t like to follow up with anything. I’m on B12 injections and Folate tablets because my levels are so low but I have to be the one to push for blood tests to review my levels because they just don’t seem bothered.

In terms of pain, I’m not sure I recognise the cramping I feel as pain, I feel swollen inside and do feel discomfort, especially if I’m having a “bad tummy day” but I’ve never thought of that swollen feeling as being bloated or anything before. I often do feel “movement” in the evenings and trapped wind semi regularly which obviously isn’t comfortable for anyone. 

[Jeffrey Roberts]

That's very encouraging that your consultant is working with you to find a treatment. Please let us know how the ondansetron is working for you. Amitriptyline can take 4-6 weeks to adjust to the side effects. It does make you feel zombie like for a while.

Your B12 being low is curious. That can occur from Crohn's disease. Maybe you can ask them to check your C-reative protein with your blood work. That will indicate if you have any inflammation. Not a symptom of IBS, but rather of IBD. Lately, if your doctor can order a fecal calprotectin stool test that you be helpful. It also looks for inflammation in your bowel and if above 75, it's correlated with IBD vs. IBS.