Tests, tests, tests..:
Hello all. I’m very new here and have had a ready through lots of posts but wondered if anyone had had a similar experience to myself. Apologies in advance for the long story!
I’m a 32 year old female, last year (2021) I began loosing weight, I didn’t really take much notice but by March it had dramatically dropped. I visited my GP was was told I was anaemic, however by now I also had other symptoms such as abdominal pain, constant mouth ulcers, bloating, nausea, constantly cold and a change in my bowel habits. So I provided a stool sample that was positive for blood.
I then had a colonoscopy which showed some ‘red marks’ on my bowel, biopsies were taken. Next was an endoscopy, all normal apart from inflammation in my oesophagus, biopsies taken anyway. Biopsies came back ok.
I then had a nice five day stay in hospital as the abdominal pain was so severe, I was also vomiting. They weren’t sure what the problem was. Had a CT scan which was fine other than a tiny ovarian cyst.
I saw a consultant at the gastro department in hospital and he said he believes this may be IBD.
Then I had an MRI two weeks ago. I have just been informed that although my MRI was fine, there was actually some inflammatory change in my sigmoid colon and rectum. Now I have a flexible sigmoidoscopy booked for next Tuesday.
I suppose I’m just wondering if this seems like the journey anyone else has had? Both my doctor and consultant seem to think it is IBD we are looking at here but it’s been such a long winded process. I’ve been so well, led on my bathroom floor in tears for hours and hours due to abdominal pain and vomiting. I am drastically underweight with a BMI of 16.5. I just want to feel better!
So worried this flexible sigmoidoscopy won’t show anything and I’ll be back to square one!
Sorry again for the essay. Thank you to anyone who reads 😀
Hi
First of all, sorry to hear the pain you're going through, but at the same time, I know exactly what you're going through. Yes, this is very familiar to me.
I too would spend hours in the bathroom curled up in the fetal position from the pain and I admit as a guy, I was in tears. The pain would come every few minutes, especially after eating.
My weight just fell off of me. I was an athlete and 170 lbs, at my worst, I was 115 lbs.
I'm thinking from what you describe it is IBD especially if there is inflammation in the sigmoid and rectum, sounds like UC to me. The sigmoid should show it but fingers crossed it shows something and you get some answers.
If it is IBD hopefully they can get you started on some meds to help or even start you on a biologic right away.
Fingers crossed for you
Let us know how you get on
Vern - IBD Team MemberThank you for your reply Vern.
I have my flexible sigmoidoscopy this morning. They said no inflammation was visual, but they took some biopsies because apparently sometimes inflammation can’t be seen by the eye. Even though it was there on the MRI I had 😭. So I guess now I wait again. I just don’t understand the back and forth. It’s so draining feeling so unwell and being in so much abdominal pain daily and feeling like I’m getting nowhere to sorting it.Sorry to hear you are still suffering. I understand the frustration. I felt the same with the back and forth. I wish there was something I could do to help. Hopefully, the biopsies come back with something that will direct your doctors to proper treatment. If not, maybe suggest another test such as the PillCam or barium follow through. If they say you don't need it, then request it instead of suggesting it because there is obviously something going on, and if they suggest it is all in your head....that's when maybe it's time to find another doctor. That happened to me once and I moved on to another doctor because the pain, blood, mucus, vomiting, fever, sweating, weight loss, and the like were definitely NOT in my head.
I hope you get the answers you're looking for with the biopsies.
Vern
you are not alone. I've been an active member of the IBD community for the last 8 years, and your diagnosis journey is like many others I have read.
My personal diagnosis was very quick. Symptoms came on thick and fast out of nowhere. After two weeks I went to A&E, had a colonoscopy, and was diagnosed with ulcerative colitis. I was admitted for treatment for UC, anaemia, and dehydration. I feel lucky that I had the fast diagnosis, but unfortunately for me, my disease progressed so rapidly, I had to have emergency surgery less than a week after being admitted. Didn't really have time to get my head around anything, and it was 2007 so I didn't have the internet in my pocket to understand anything that was happening better or to talk to anyone!
How are you getting on at the moment?
- Sahara (team member)Maybe you will finally get a diagnosis so you can get the help you need.
Let us know
Vern - IBD Team Member
Gosh, I'm sorry you've been going through so much. I'm hoping that the IBD Clinic will have some great insights, since they specialize in this disease. Please do keep us updated. I have you in my thoughts! -Eshani (IBD Team Member)
