Need some help and advice !

[DM14]

Ok essay ahead.. i have had problems with my intestines since the age of 12 (I am now 26)

In the beginning years struggling to turn yp to school in severe pain. Doctors told me it was just constipation and gave me meds like Movicol-no help at all. They didnt aeem to believe my pain and I even got sent to a psychiatrist as they said it was all in my head!!

I kept chasing up my pain...doctors then sai its ibs. I have had every imaginable medication (pain relief, laxatives, supposirtories, anti spasmonal, stool softeners) and no luck. I even tried a device that I did myself blew a balloon up inside my rectum ans filled it with water--still no relief what so ever. Spent countless times in A&E and just got put on morphine until I stopped crying!

Fast forward a few years (about 17) i got tested for coelic disease, ulcerative colitis, crohns. I have had a endoscopy ultrasounds a colonoscopy and it showed nothing. Further on (about 23) i was now not going number 2 for three weeks!! Then finally got diagnosed with Anismus-recto dysfunction my rectal muscles work backwards to how they shoul so I now have botox injections under anaethetic

(Age 25l although opening my bowels a little more frequently (still no where near enough!!!) I am at breaking point with abdominal pain, Severe distention, severe back pain,blood in stools, nausea and extreme fatigue. I questioned the doctor about endometriosis. Had a laparoacopy this year and it was negative

I am ADAMANT that it is Crohn's. Couls my colonoscopy have not detected it properly? I also have b12 deficiency jabs every 10 weeks. X

[CazzieH]

Crohn’s is hard to diagnose so keep an open mind on what your body is reacting to. Specialist dietician might help or try a holistic approach as the body is such a complex thing the symptoms don’t always reflect what is actually wrong. Not much help for you but I hope you get it sorted soon. It might be that you learn how to manage the symptoms.

[DM14 in reply to CazzieH]

Ive honestly listened to my body, listened to all the treatments and diets thrown at me. Given them all a good long try. Ive had enough now. Im nor a guinea pig there to be tested on. I need some help to het through my days.

Do you think a second colonoscopy could show differenr things 6 years later?x

[CazzieH in reply to DM14]

It’s so hard to give you good and useful advice without any medical knowledge myself. I come to this with a few years of supporting a family member through 5 years of periodic chronic illness and nobody taking it seriously. Crohn’s tends to have flair ups in symptoms then a period of quiet. I assume the endoscopy only shows to the stomach and Crohn’s can affect any part from mouth to bowel so another endo might be useful as might a colonoscopy. As much as it goes against the grain ou May have to allow guinea pigging so everything can be investigated. X

[bantam12 in reply to DM14]

Did they take biopsies from several different areas during the colonoscopy ? You possibly weren't having a flare and inflamed at the time so they missed detecting either crohns or ulcerative colitis. You need to find a good Gastro or Colorectal doctor and demand more tests and another colonoscopy as things could be very different 6 years on from the last one.

PS it took 30 years to get my ulcerative colitis diagnosis, I happened to see a good Gastro and he knew what it was at my first appt !

[DM14 in reply to bantam12]

It was years ago so Im struggling to remember, but I think they just had a look and nothing was sent off to be tested. I remember the day and I definatley was not having a flare!

Do you have any suggestions how to search for the right doctor (when you read their profiles they all seem amazing)

Also during my laparoscopy the surgeon said my intestines looked a mess and very distended. So surely this is good evidence? (He was a gynae) x

[bantam12 in reply to DM14]

Finding the right doctor is not easy, look at profiles, call the secretaries and ask questions, your GP should have some idea of patients feedback but even after all that you can be lucky or not. I've been seeing my Gastro for 21 years, I'm not convinced he's the best but we get on well and I know he will sort me out if things go pear shaped again, I've been in remission for many years !

[DM14 in reply to bantam12]

@bantam12 could you tell me a little more about your ulcerative colitis symptoms please (only if you feel comfortable)

I have read alot that diarrhea is a main symptom--I have chronic constipation can this also be a symptom?

[willow24 Administrator]

crohns does not start with constipation, it is diarrhoea, bleeding, mucus, weight loss, urgency and going several times a day. Sluggish bowels/constipation in crohns occurs after years of flare ups and the bowel becomes thickened with scar tissue causing strictures, or the over use of opioid medications.

Have blood tests showed any inflammation and have you done a faecal calprotectin test - this shows inflammation specific to the bowel

Also is the blood you pass just on the stools, mixed in with stool, on its own or mixed with mucus?

A colonoscopy will show crohns even when not in flare as it will show scar tissue, also biopsies show that the cells of the bowel lining are not 'normal'

It may be worth asking for a second opinion and reqesting a further colonoscopy