I don’t think this is IBS. Please help.
Posted , 6 users are following.
About a year ago, i started feeling really dizzy. nauseous, etc. Felt really different than any sickness i felt before, but it went away. This was around last July. Around October 2019, I started feeling very mild abdominal pain and the next month I noticed some streaks of blood in my poo for a few days. Since then ive never seen blood. The pain has just gotten worse. This isnt just if I eat bad I get a cramp, every f***g minute of my life is pain. My entire abdomen (especially the lower right side) feels like theres a constant stitch. I cant do anything. Im 17, I had to leave school and I just cant deal with the worry of it being anything worse. We've gotten an abdominal x ray (they didnt even make me take the stuff to highlight your colon) and a few blood tests and stool tests for parasites and blood etc. They are now refusing to give me a CT scan/colonoscopy because apparently my symptoms dont warrant an emergency and bexause of covid so i have to wait 3 years apparently. I just dont want to live in a world where a concerned teenager thats living in constant pain and stress to the point where ive just been thinking of killing myself isnt right. Nothing helps, no change in diet, pain just is steadily getting worse. Feels like im just waiting to die. Any reassurance would be helpful but ive basically went through any option possible and im still just suffering in silence. Im a healthy kid, i was in shape, theres no reason for this to happen, no family history. But i am extremely lonely and depressed but i doubt that could make me have diaharrea 8 times in one day and be in pain 24/7. Feels like most of my stress would be gone if this st was gone. ****I cant leave my house, I cant do physically activity, i cant work, i cant do school. This is destroying my body and my life.
0 likes, 25 replies
sam18386 derek0816
Posted
insist they check for appendicitis. right side is NOT IBS typical, we have lots of organs inside. ask for other tests. i hope someone tells you the truth. does anything like bread, cake, biscuits or pasta make this worse? i wish you luck!
derek0816 sam18386
Posted
i believe they have already theyve done a urine test, a ton of different blood ans stool tests and have now with that determined that this chronic progressive pain is just in my head. nothing makes it worse its just always bad and its on all sides, left, sometimes center, my back, but mostly my lower right it feels like a heavy feeling
sam18386 derek0816
Posted
hmm derek, it still doesn't sound good! hopefully someday you'll get a response ad to what this.
kc22593 derek0816
Posted
Hi Derek,
first, i'm so sorry you're struggling with all this pain and no one seems to be listening. I understand your frustration as I myself have battled with the healthcare system just to be able to get a correct diagnosis. My best advice to you is to stay persistent with doctors. How far away are you from surrounding hospitals? You need to insist on getting a colonoscopy, and not to take no for an answer. I'd suggest going to another hospital and/or looking for a GI specialist who can help you. You're entire quality of life has been taken away, and it's NOT all in your head.
How are you feeling now? do you still have frequent diarrhea? And your pain is more generalized now? what about any associated symptoms..joint pain, fevers, mouth ulcers, headaches, etc?
I know how frustrating this is, but please know you're not alone. It can feel incredibly isolating and depressing, and it's all made worse when doctors make you feel like it's in your head. It's not, and always listen to you intuition about your body. You know yourself, and unfortunately being our own advocate can be extremely frustrating and exhausting..but keep pushing. And please keep sharing, we are here for you.
derek0816 kc22593
Posted
My GI specialist has said we cant get a colonoscopy or a CT for about 2 years "because of covid backing them up"
My pain goes around my entire abdominal area, but only cramps up occassionally through the day. There is a constant cramp/heavy feeling in my lower right abdomen. No headaches, vomiting, mouth ulcers, occassional nausea, no joint pain. I have a BM like 3-5 times a day, usually very loose or diaharrea. Unless i start throwing up blood, im going to get no medical help and i really feel like this is something serious
moon53540 derek0816
Posted
Has Crohn's disease been ruled out? Or possibly Coeliac disease?
I would recommend taking vitamin d and b12 supplements. Have your iron levels been tested?
derek0816 moon53540
Posted
celiac ruled out, the stool tests that detect the inflammation came back negative. think they ruled out appendix anyway, all vitals are good, ive had anemia for like 10 years now
moon53540 derek0816
Posted
Is the anaemia down to diet or is it some other cause? Do you take iron tablets?
derek0816 moon53540
Posted
iron defiency anaemia since i was really young, never knew the cause and i used to take them but not anymore. i tried for a bit recently and they just constipated me and made things worse
derek0816
Posted
also if it helps, the pain is way worse when i lay on my right side, sometimes the pain is in my ribs and when i breath it hurts but sometimes its under the ribs and even the pelvis sometimes
derek0816
Posted
^^ rib level but the pain is around my back (kidney?)
sam18386 derek0816
Posted
hi derek, there is a nasty painful inflammatory illness called condochrondritis,it causes pain under your ribs or it's possible your have pulled something or cracked a rib maybe?
derek0816 sam18386
Posted
it is possible as i train muay thai, but its been going on for 9 months and my bowel habits are affected too. feels just like my entire ascending colon
moon53540 derek0816
Posted
Have you lost weight since all of this has happened?
Scopes are now happening on the NHS so what you have been told so far is not true, you don't have to wait 3 years. There will be a waiting list but not for that long. If you are losing weight and particularly if there is blood in your stools you will definitely get an appointment. I would recommend trying again particularly as you have iron deficiency anaemia. I can understand them not wanting to give a CT at your age, for the radiation risk, but a scope is another matter.
derek0816 moon53540
Posted
ive lost weight but its due to not eating that much and im staying around the same weight (115, 5'4)
the stool test detected no blood but they are aware i saw some months ago, they just dont really care about the fact there is a constant progressive pain because im only 17. i live in canada, and i only have half a year of being able to go to the childrens hospital and they still arent giving me proper treatment.
i cannot work like this, i dont even feel like ill need to because i feel like its something serious. But if it isnt, and im just stuck wirh this, how am i supposed to live? they wont give me a diagnosis, and i cannot work or do anything, and my home situation isnt the best.
derek0816 moon53540
Posted
i also just noticed i have a swollen lymph node in the side of my neck. should i tell my doctor?
moon53540 derek0816
Posted
something definitely sounds wrong and sometimes you just need to keep trying with your doctor. Make an appointment and explain you are anaemic with no apparent reason, you are losing weight without trying to, you have constant diarrhoea with blood in sometimes, nausea and say you have central abdominal pain going out towards the right side and see what they say. Don't explain every little detail but answer what they ask you with quick and to the point answers. Then the doctor will take you more seriously. If you go into too much detail about everything, they may dismiss you as very health anxious. The things I have written down to tell your doctor are the most worrying things in my opinion and I would be surprised if they don't give you further tests with that description of symptoms.
derek0816 moon53540
Posted
he is aware of all of that, he literally just says its all in my head. now i have a painful lymph node on my neck too which is unusual, one on the back of my head, which i believe means im fighting an infection? noticed some muscle pain as well in my back, just very achey pain and as well as the 24/7 abdominal stitch. he said will refer me to the childrens hospital gastrointestinal clinic which is a good start but its going to take a bit probably. im going to ask for an ultrasound and CT scan, and if this lymph node gets more painful for more than a few weeks im gonna ask for a fine needle biopsy as well
moon53540 derek0816
Posted
they may be reluctant to give you a CT because of your age and the cancer risk, but they should give you an ultrasound and possibly a colonoscopy. See what they suggest before asking for the scan you want. A CT is a lot of radiation for someone your age and unless doctors have tried every other scan or scope, that will probably be last in their list. I understand your frustration but see what they suggest first at the gastrointestinal clinic.