Frustrated and 4 months later

[Tracey1788]

Back in January I had a core needle biopsy on my breast following a mammaogram. This resulted in me having Breast Sepsis and on several high dose antibiotics for 8 weeks ( Fluacolxicillan, amoxacillan, flagyl, trimethorpim, augmentin) . I happy to say that I don't have cancer. Two weeks after the tablets were stopped I started getting severe lower right quadrant tummy pains and ended up in casualty. Dr put this down to IBS and I was discharged.

I did not accept this diagnosis as this was pain I hadn't experienced before. The only symptom I ever had for IBS was proctalgia that would wake me up from my sleep especially after a stressful day.

Lots of bloodtests lft, crp,hb,tsh, coaeliac. lactose etc etc done all normal with the exception of folate deficiency. Tests so far:

Bloods - Folate deficiency
Abdominal Ultrasound - Revealed 1cm Gallstone
MRCP - Revealed 1cm Gallstone and 1.3 x 1.5 cystic lesion Pancreas
Colonoscopy - Revealed inflammation in terminal Ileum, Normal Otherwise
Endoscopic Ultrasound - Revealed Erosion prepyloric fold bx inflammatory. CLO test negative. cystic lesion above splenic vein so wasn't bx, Review in 3 months
MRE - Normal
Faecal Calprotectin 139

I was prescribed Mezovant but stopped after 5 days due to side effects and now I am to have a capsule endoscopy.

My symptoms of pain, nausea, fever, explosive bowels have not changed. I have not been in contact with anyone who has TB and am not on NSAIDS.

So all these months have gone by. I am unable to work because I feel so unwell and yet have not been officially diagnosed with crohns / Colitis. I am not losing blood or weight on a positive note. It was mentioned today at my GI appointment that an mre cannot pick up ulcers in the small bowel.

What does this sound like to you? Im concerned I may be medically retired soon if I don't get treatment for my condition.

Any advice is appreciated. Thanking you in advance.

 

[bozzylozzy]

Im glad to see that your biopsy was clear for cancer..

Because you have had quite a few tests already - it could be worthwhile seeking a 2nd opinion?
Having the capsule endoscopy is a good idea. So at least your current GI hasnt given up yet

the only thing is.. doctors are reluctant to give a diagnosis without a positive biopsy (as many of us in the undiagnosed club would agree with)

Ideally you need a doctor who is willing to treat the symptoms.. maybe a short trial of steroids? IBS wouldnt cause a fever and wouldnt cause inflammation..
As you already know - Crohn's usually affects the terminal ileum.

Do you have any other symptoms, such as joint pain?

 

[Tracey1788]

Im glad to see that your biopsy was clear for cancer..

Because you have had quite a few tests already - it could be worthwhile seeking a 2nd opinion?
Having the capsule endoscopy is a good idea. So at least your current GI hasnt given up yet

the only thing is.. doctors are reluctant to give a diagnosis without a positive biopsy (as many of us in the undiagnosed club would agree with)

Ideally you need a doctor who is willing to treat the symptoms.. maybe a short trial of steroids? IBS wouldnt cause a fever and wouldnt cause inflammation..
As you already know - Crohn's usually affects the terminal ileum.
Do you have any other symptoms, such as joint pain?

Hi There Bozzy

The biopsy taken from my T.I revealed acute mild inflammation. I am RF positive I do suffer with joint pains. When I started suffering pain in march this year I also noticed a red inflammatory appearance in the top half of my legs, its not dermatological, its inflammatory (looks like red and blotchy but no broken skin as if every blood vessel can be seen) and regular mouth ulcers.I also noticed a neurological symptom of unsteady gait ( kept feeling I was going to fall down)

The pain I experience is a sharp stabbing /stinging pain in my T.I so Im thinking ulcers. With the prepyloric fold erosion Im thinking Ulcers but was treated with Omeprazole. Explosive bowels usually within 30 minutes of eating or pencil thin otherwise. Yellow/brown sometimes steatorrhoea. lethergy,Anorexia. I spoke to my Gp today and hes going to try me on Osalazine to see if this helps, but given the side effects I had on the Mezovant he cannot guarantee the same might happen again. All I want is to get better. incidently I have noticed certain foods that are either greasy or spicy cause me to be in considerable pain, yet ive been tested for intolerances. The GI said I could have steroids but im reluctant to take them. Im curvateous and don't want to put more weight on. All these symptoms materialized when I ceased the lighter life diet just over 2 years ago and were exacerbated once I stopped the antibiotics earlier this year

 

[valleysangel92]

So glad your biopsy was clear for cancer!

Unfortunately, "its IBS" is something a lot of undiagnosed people get told, because doctors just cant come up with anything else. Your symptoms dont seem consistent with IBS though and you know your own body, if it doesn't feel right to you then keep fighting. Regular mouth ulcers are also a symptom of IBD.

There is also a theory about crohns flares developing after strong antibiotic use. I was diagnosed after a bad flare that started a few weeks after having two courses of strong antibiotics. There's even a thread on here dealing with developing crohns after the use of antibiotics.

Keep fighting, if you arent happy with your current GI then seek a second opinion, symptoms like yours should be taken seriously and shouldn't be dismissed. I hope that you find some answers soon and can begin on the way to getting better.

 

[valleysangel92]

http://www.crohnsforum.com/showthread.php?t=7942

Heres a link to the thread about crohns and antibiotics, it might be interesting to you.

Just to add... I know steroids seem horrible but they do help a lot of people to start feeling better, they arent a long term fix but they can get you on the road to recovery and help substantially with inflammation, dont let the side effects put you off .

 

[lizbeth]

Hello Tracy, I'm sorry you're having such a frustrating time, with all the testing so far you probably feel like you're banging your head against a brick wall. Hang in there as already said, you know your body and its telling you something isn't right so keep in contact with your GI until you get something planned. Do you have an IBD nurse you could contact who might be able to speed things up?

You mentioned noticing some foods making you feel worse, has anyone suggested you try a low residue diet for a while, and keep a food diary so you can track your symptoms, it's also a useful tool to take to GI appointments. There's some really good info on here about low residue diet, basically means reducing the fibre you eat and avoiding spicy foods, caffeine, food with skins on, nuts and whole grains, describe and corn products, and I can't remember the rest, sorry, I switched to low residue and did find over time a reduction in my symptoms. It's worth giving it a go?

I really hope you get some information soon and are able to plan a way forward. Do you have an HR person you could talk to about your employment concerns? What is their sickness policy? Good luck with it all, please let us know how you get on and I'm really glad you tested negative for cancer .

 

[bozzylozzy]

Oh yes.. I'll second lizbeth on that. The low residue diet helped ease things for me too.

Because you already have an auto immune illness with RA.. it wouldnt surprise me if you had IBD.
My rheumatogist prescribed sulfasalazine for my joints but can help maintain happy bowels (although it wont induce remission.. it can maintain it) and that drug has helped my joints so much! A little bit of tweaking with it was required and has helped my tummy somewhat too.

I get that stapping/sharp pain in LRQ too (found inflammation on scope) feels really sore and it stings.. like its raw skin and somebody is rubbing salt in it lol.
So I am just trucking along with the meds.. and symptoms are less regular than before.

I really hope your GI will at least try to treat you soon xx

 

[Chickadee]

Have you been tested for C. diff? http://www.mayoclinic.com/health/c-difficile/DS00736

 

[Tracey1788]

Hi Chick

No ive not been tested for c-diff . I do know exactly what that is as I work in a hospital and know for a fact that I definitely do not have that. Why do u ask?

 

[Chickadee]

It could be causing many of your symptoms and can develop after a course of antibiotics. It might be worth having a stool test to rule it out 100%.