What now....

[Tess1985]

I think I am probably posting as feel at a bit of a loss and I have finished reading the internet 😂🙈 I was really unwell jan-April. Generally run down, no energy, frequent urination, pain under left ribs and in left side and left hip, along with passing stools more frequently that were very thin. Calprotectin results were in the 600’s. colonoscopy last week looked fine, although was very challenging for the doctor and painful for me! Still waiting for biopsy results... but I guess I am just feeling impatient! I feel lots better now aside from an ache/burning very low down in my back/buttocks. I understand colonoscopy only looks at part of the digestive tract, but I’m just wondering what else I could be facing here? The doctors have said results above 500 tend to be fairly conclusive of ibd, however they obviously won’t diagnose or treat anything without evidence. My symptoms seem to change and evolve all the time ... any thoughts????

[Rosiesdaddy21]

I’ll second this 🙈

[FRreedman]

I can quite confidently tell you you have an inflammation, somewhere inside your body. I know for a fact that Crohn's disease changes and evolves on a weekly or even daily basis. It isn't even the same symptoms for two different people. I, sincerely, hope you don't have Crohn's disease, because it really is an incapacitator. However, if you do have it, well, at least the disease itself, is not a killer (I'm not so sure about the medication though). Whatever you are diagnosed with, good luck.

[Tess1985 in reply to FRreedman]

Thank you very much for you reply frfreedman, you seem to be such a man in the know! Do you know how likely/common it is for someone to have crohns, when it isn’t sighted on the colonoscopy? Obviously I wouldn’t wish something such as crohns on my self (or anyone else) but actually not knowing what is going on is tough.... I hope you are well

[Munchkinfeet in reply to Tess1985]

Hey Tess, sorry you are still in limbo. What made the colonoscopy difficult? Did the doctor give you any ideas of diagnosis at all?

I saw my gastro on 30th may. I am now on amitriptyline, loperamide and bisacodyl, omeprazole and cyclizine. He has referred me for urgent colonoscopy and endoscopy. I am in a constant haze and don't know what my body is doing from one hour to the next. I am either terribly constipated or suffering with diarrhoea and still pain. Feel like stopping the meds, it's not good. Lost a stone and a half.

I don't have a date yet for my scopes and have just cancelled our summer holidays. Totally fed up

[FRreedman in reply to Munchkinfeet]

Hi, Please do not give your medication up. You are displaying the signs of someone who has a degree of IBD, because your situation changes frequently (Diarrhoea/constipation and also weight loss) , although Weight watchers would go out of business and I would be very rich if I could just find the bit that causes weight loss and isolate it. Please bear with the time it takes to confirm your diagnosis and obtain a prognosis.. because, the wait is definitely worth it.

[Munchkinfeet in reply to FRreedman]

Thank you, I am trying, but I have been off work since April and it's all really getting to me. I've had mouth ulcers, swelling on my lips, now inflammation under my eyelids and my eyesight has gotten worse. Feel like a zombie most days. Amitriptyline giving me nightmares and making me drowsy too. Sorry to moan.

I keep thinking they will find nothing on the scopes. I just want to find the cause and start to feel better

[FRreedman in reply to Munchkinfeet]

I couldn't get on with amitriptyline and got switched to Nortriptyline instead, which seems to be working well at the moment.

[FRreedman in reply to Tess1985]

As I am not a medic, just a patient with 52 years experience of the disease, I don't know the odds, but I do know that very often the Crohn's is missed by either colonoscopy or endoscopy. The reason quite simply, is that it can be taking hold anywhere along the digestive tract from mouth to anus, therefore it is going to be a brave or reckless doctor who is going to say NAD (No Adverse Discovery), without having both 'oscopys done.

[Tess1985 in reply to FRreedman]

Sometimes I wonder if someone with experience has a more broad view than a medic 😂 my consultant hasn’t mentioned endoscopy, he said they will do an mri if Results don’t show anything. Thank you for your input

[pidpol1985 in reply to FRreedman]

This is true all my scopes came back normal except small bowel capsule endoscopy.

[Tess1985]

Ah I’m sorry you are so fed up, the waiting is awful. Hopefully if he has referred you as urgent the wait won’t be too long.

My notes from the colonoscopy say ‘challenging intubation due to acute splenic flexure and sigmoid loop formation’ but that all sightings were normal.

[Munchkinfeet in reply to Tess1985]

I said that to you before about the splenic flexure syndrome!

[Tess1985 in reply to Munchkinfeet]

Did you?? Will go back and read the messages!

[Munchkinfeet in reply to Tess1985]

Yes, in one of your other posts last month maybe?

[Tess1985 in reply to Munchkinfeet]

Ah yes, just read that conversation. Have you considered a career in GI? 😂 doesn’t account for my calprotectin results being in the 600’s though....

just read about your symptoms, it all sounds utterly miserable, I’m sorry you are suffering so much x

[Eixor57]

I sure hope it’s not an abscess. I have one of those and no one could find out what the pain was until it surfaced. So much pain.