Desperate For Help/Advice

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Sep 29, 2015
Messages
9
I am completely new to this and had never actually heard of Crohns or IBD until a few days ago. Can I possibly tell my story and see if anyone can relate to it.

Around May this year I had an episode of recurrent odd bowel movements where I needed to go urgently first thing in morning, then again an hour or so after. It wasnt diarrhoea but soft and I always felt like I still needed to go. This passed but started again June time when I had two days of terrible diarrhoea then the above symptoms again. There was no bad cramping pain but felt pain around belly button and short dull pains at random places in my abdomen. Also I started peeing lots. Went to see my doctor who seemed very concerned it was a gynaecological issue and sent me for a lower abdominal CT scan. Al clear so doctor told me the bowel issues were just stress related. I have to add here that I have always had back isdues due to undiagnosed disc issue. I began to get horrendous nerve type pain. Burning over my abdomen, inside my thighs and hips. Doctor put me on Lyrica which has definitely helped. Doctor still not really concerned about my bowel issues. Last week I passed fresh nlood on very dark stools for the first time. This lasted for about a day and a half. Went to doctors who appears gravely concerned and has booked a Colonoscopy for me so currently waiting on that. Doctor never offered any information on any other disease it could be so leftme thinking tthat it was almost definitely cancer and there was no hope. Having found out about Crohns myself I feel I have some hope. Is it possible to have mild symptoms? I have never felt ill nor have I lost any weight. Currently having 3/4 soft urgent bowel movements a day, vague pains in abdomen, particularly left side and pain in back and hips. No more blood since last week.

I would be so so grateful for any help no matter how small. Currently feeling terrified and very alone😢
 
Before I received a diagnosis of Crohn's Disease, I too wondered if I had cancer. I had bleeding and that is what made me concerned. I don't see why it couldn't be mild. Welcome and I hope you find answers. Feel free to ask any questions.
 
Thank you so much for your reply. I'm just concerned having read through peoples experiences and seeing how awful some have it. Mine is generally consistent low grade pain. Im certain given that much of the symptoms are similar to bowel cancer that most people must be concerned until diagnosed. I wouls so like to know how it all began for people especially over 40s . Thanks again☺
 
I was 34 when I was first diagnosed. I had surgeries for hemorrhoids and a fistula within the same year.. I was having trouble healing up from the surgeries. I went to a doctor and he determined that I had Crohn's Disease. I wish you the best.
 
Hey I'm new hear too and concerned about the same thing. i have my diagnosis but this most recent flare has included painful lower back ache mainly when sitting and relieved when i stand up also radiating into my hip! blood in my unformed BM. my GI nurse has fobbed me off saying its probably just a coincidence but im only 26 don't suffer back pain usually and have only been resting so haven't injured myself. so frustrating. so sorry to hear of your worries and i hope you get a good outcome!! i'm feeling like back pain must be a symptom?? sending positive thoughts your way!
Emily
xx
 
I wish you both the best. I don't know if it rheumatoid arthritis you both have but I understand that some with Crohn's Disease get it. I have some lower back pain sometimes .
 
I was 55 when I was dx'd. Started with urgency then blood and mucus.Had sigmoidoscopy and dx'd with Proctitis.Put on Asacol suppositories and all clear after four weeks.Apart from regular flares I've been OK.Last year I was dx'd with Crohns colitis as the inflammation has travelled higher up the colon.But I count myself as very fortunate compared to a lot of people on the forum.It's always worrying at first, but once you begin to understand your own pains and gurgles and toilet trips,you'll cope better.We're all here for support and advice.I also have chronic low back pain.
 
Welcome Teasle
Sorry to hear you are having so many worries.

I was diagnosed at 42 after two separate, emergency bowel resections. However I always had gut trouble as long as I can remember, and at one point was diagnosed with IBS. They did not find my crohns with the original colonoscopy or endoscopy. I finally had a capsule endoscopy which showed it in mid small bowel. However most recently the colonoscopy has shown lesions in the ileum.

It is true however that stress can make some symptoms worse. And it takes time to get the proper diagnosis. Just be persistent and remember to be your own patient advocate when talking to your doctors. It can be a bit of a long road finding what works for an individual.

Hope you can find answers soon. Best wishes.
 
It can be difficult to diagnose crohn's due to variability in symptoms. I was diagnosed at 18 years old after a year of symptoms. For me, it started with significant rapid weight loss. Bloody stools followed with lots of pain, especially really sharp pains when having movements. A lot of docs don't believe stress has anything to do with it. I found lack of sleep very disturbing to my bowels. Your approach does sound similar to many that are here.
 
Thank you so much for your replies. I am so very grateful to all of you. I have no doubt I will have a lot more questions in the future but its so nice to know I am not alone with this☺
 

Latest posts

Back
Top