New and in need of advice if possible

[sarahfh]

Hello, I hope this is okay I'm just not too sure where to turn and am still waiting to get to see my doctor.

I'm not too sure where to start but I've had on and off digestive troubles for years which in the last 18 months have escalated. I am 24 and have M.E/CFS and endometriosis with a family history of autoimmune conditions on my mum's side. I have a bit of a back story for the last 18 months but I won't bore you with it!

In the last 18 months things have become a noticeable problem for me and I've finally got the GP to take me seriously and run some tests but it's only brought up more questions. My symptoms have been in bouts of between 2 weeks and most recently 9 weeks, with no more than 10 days of normality in between. It's been diarrhoea, usually with mucus and a couple of occasions with blood too, which has increased my bowel movements per day too, abdominal pain usually in three specific areas but sometimes generalised and always worse after eating, nausea, urgency with my bowel movements and sometimes feeling urgency but only passing mucus, bloating (although that could be related to the endo), weight loss and an increase in my fatigue and joint pain. The most recent flare up of these symptoms lasted nearly 9 weeks which is the longest so far and I lost half a stone in around the first 3 weeks. I'm already very underweight so that got very dangerous and is what sparked my GP to run some tests.

Sorry for going on a bit there I just thought it might help with the next bit. So my bloods all came back "satisfactory" and today I got my fecal calprotectin result back, which was normal.

I know from everything I have read that the fecal calprotectin being normal (though no numbers given sadly) basically means my GP will give me the IBS diagnosis but I'm concerned that the blood and weight loss are more indicative of IBD than IBS and I don't really know where to go from here. The GP was going to refer me to gastroenterology but then asked me to do the FC test and having spoken to the Secretary at the GP surgery it seems no referral has been made. I'm worried that that's going to be it and I will be given the diagnosis of IBS and left at that. I just wondered if anyone has had similar experiences or had any advice? Thanks in advance.

 

[ronroush7]

Don't have any answers but hope you get help soon.

 

[DJW]

Hi and welcome.
Sorry you're going through this. I know how difficult it can be.

Blood, weight loss, joint pain, to me means pushing for an appointment with a gastroenterologist.
I'd suggest keeping a journal of all your symptoms and questions you have for the doctor.

The gold standard for IBD diagnosis is a colonoscopy with biopsies.

Sending you my support.

 

[ronroush7]

You might want to keep a diary or a food log also.

 

[ronroush7]

Support sent.

 

[Lady Organic]

I agree with DJW, push for a GI appointment and don't take no for an answer. fecal calprotectine can help orient a diagnosis but does not sign it. CD can be anywhere in digestive track and FC only investigate lower parts. good luck.

 

[sarahfh]

Sorry for such a late reply, things have been all over the place. So I got in touch with my GP surgery and a referral has gone to gastroenterology so I'm just waiting for an appointment. I have to see my GP as he said the omeprazole I've been on for a while (mixture of reflux and protecting my stomach from frequent painkillers) can cause diarrhoea? I'm not convinced it's the cause between time lines and the on and off nature of the diarrhoea but there we go.
So the strange thing at the moment is after about 10 weeks of constant symptoms it has somewhat settled again. I'm having "normal" solid bowel movements, once per day with only a little bit of mucus. However, the pain is not settling at all and its getting more frequent and intense. I've had to miss a couple of days of work now because it's waking me in the night as well as being there in the day. If I don't eat, it's much more manageable, but still a general ache. It's always in the same three or four places too. I'm honestly getting so worn down by it all now.
I desperately need to get control as due to M.E/CFS and endometriosis related absences I'm already at risk of losing my job. I also can't keep losing weight or failing to put it back on, if only for my self esteem. These last couple of weeks I feel like I'm just weak skin and bones with a big bloated belly. I usually love food but lately I'm finding myself fearing it and I hate that.
I feel like it will be just my luck that all my tests will come back clear, I will be told it's just IBS and to go away and live with it. Don't get me wrong, the last thing I want in so many ways is an IBD diagnosis, but I guess I just can't imagine having to put up with all this forever, with no reliable treatment available.
Sorry for the ramble, I guess I'm just having a tough week.

 

[shamrock15]

Everyone on this board has had at least one of the tough weeks. For most of us they extend into months, years, decades, so please feel free to blow off a little steam. It helps, and people here actually DO understand what you are feeling. There are some small changes to your diet that may assist you (I only mention this because you state an improvement in symptoms when not eating) such as going to soft diets and liquid diets for short periods. They reduce the bulk that goes through and can also reduce some of the irritation. It may help. Fish is a great source of protein in the soft food side. The food diary mentioned can help you figure out what works. There may be some veggies that you work well with while others irritate. It is very much worth logging every bit of food and water that you consume along with the time and your sleep patterns. Tedious, but it can help locate where problems are. If it does end up as IBS instead of IBD it may prove even more useful in the management. Best wishes, and check in here whenever you need.

 

[ronroush7]

I agree with DJW, push for a GI appointment and don't take no for an answer. fecal calprotectine can help orient a diagnosis but does not sign it. CD can be anywhere in digestive track and FC only investigate lower parts. good luck.

Can yhr calprotectin tell if your bleeding even if the blood work turns out fine? I have seen something of a darker color in my stool earlier today but not sure if it is blood.

2

 

[Lady Organic]

Yes, FC appears to be very sensitive to evaluate inflammation. In my case, Blood works are basically useless. For other patients, blood markers are very sensitive to inflammation. Have your BWs been useful in the past to predict or indicate early flare?

 

[ronroush7]

Yes, FC appears to be very sensitive to evaluate inflammation. In my case, Blood works are basically useless. For other patients, blood markers are very sensitive to inflammation. Have your BWs been useful in the past to predict or indicate early flare?

In the past, I have always been told I was anemic. This time,as far as I know , everything was normal.

 

[sarahfh]

Thought I would just stop by, although nothing much has changed I do have acouple more questions.

I'm still waiting for a referral to gastroenterology and had to chase it up again today, but still don't have an appointment date. My GP has changed my omeprazole to ranitidine to pre-emptively stop gastroenterology blaming everything on that. I will admit my body is taking its time to adjust though! I've also learnt in the last couple of weeks that ibuprofen is the devils work and my insides can't tolerate it, it left me with awful abdominal cramps and diarrhoea that was pure water all night, with hot and cold flashes with nausea. Out of curiosity is that a common IBD thing?

I don't know if anyone else has had this feeling but I feel like I'm just going to be fobbed off with IBS, but it feels like something more than that. I know my test results so far have all been normal but it just doesn't feel like nothing, you know. Does that make sense? For instance, I figured out my M.E/CFS and endometriosis diagnoses' before my doctors and before they finished all my tests. This week I was also diagnosed with POTS and again I suspected that before going into my appointment. I know I could be wrong and in a lot of ways I hope I am, but it just seems to fit. I don't know how to get the doctors to take me seriously, any tips?

Even though my diarrhoea has calmed down a lot over the last few weeks the general unwell feeling is getting worse and so is the hot and cold fluctuations, I keep waking up drenched in sweat but not too hot which is strange.

I know I have to just wait and see in a lot of ways, it's just frustrating. Every now and then the pain gets so bad and lasts long enough that I contemplate going to A&E but then it eases and I can't be bothered with the hassle, never mind trying to get my mum to take me seriously enough to drive me. She has IBS with her lupus and although she hasn't said it I know she thinks I'm making a big deal out of nothing or exaggerating everything. She thinks I just need to "learn to live with it" like she does.

Surely three diagnosed illnesses is enough for a 24 year old?!

 

[ronroush7]

I have Crohn's Disease and I have been told the only painkiller I can take without bleeding is Tylenol. I hope you get answers soon

 

[Lady Organic]

yes avoid Ibuprophen medication. this is well-known to cause digestive issues in some people. Again push for GI appointment. even if GP thinks IBS, its best to let the GI analyse your case (not GI surgery, simply GI clinic).