Diagnose
Hi everyone
Im writing from Belgium because i couldn’t find my answers on any plaforms. Can someone help me?
I have already 2 years chronic dhiarrea but sometimes also solid stool. I went to doctors and specialists and they did a coloscopie and the results were negative.
Now i have always pain on my left side of my colon, also sigmoide and rectum. Especially when my stool comes and passes through those places. It hurts and gives sharp pain. Also when i have to fart, really awkward.
I went to several other specialists but they never wanted to do a coloscopy again. However, i found a doctor that send me to a CT scan and the results were like this: there is a wall thickness of 4.5-5 cm at the recto sigmoide and also a little bit on the colon descending. It seems like rectocolitis. Well i said to the doctor, yes i have pain there and it is very fucked up, i cant do anything. The doctor send me to another specialist for another coloscopie, a sigmoidescopie. They took 10 biopsies in total and also a videofilm. The result: clean, little bit blood but could be from the lavement before the scopie has made. My calprotectine was also 10. The specialists says you dont have colitis… i am really getting nervous because my pain doesnt go away, what is the bowel thickness then? What is that feeling i get, the sharp pain, running to the toilet like a crazy one. Pain dhiarrea…
Always when my stool passes from sigmoide to rectum i have the feeling, NOW in URGENT i have to go. Enormous feeling i cant handle with..
Could they made a wrong diagnose? Can i have another sort of colitis? Can someone help me with this please?
So sorry you are going through this. I know how hard it is to feel unwell, yet have tests come back normal. It is so frustrating and hard to comprehend. Perhaps you can do some natural things to help ease the pain and urgency? For example, how is your diet looking? I know for me when I started taking probiotics daily, it helped greatly reduce my urgency. Also, try eating anti-inflammatory foods. Ask your doctor about a steroid suppository to help with rectum pain. -Elizabeth (team member)
It eat always clean and know my triggers so i keep away from them. Altough it doesnt matter how clean i eat, it never heals. I get so frustrated. Using probiotics make everything worse. I used l glutamine, kefir, colostrum, oregano oil, apple cider from the mother. I used really everything but it with no improvement. I did topsport and know this is all over. I dont know what i have and doctors cant help me.. i still think i have an inflammatory because of the ct scan with wall thickening. It ruined my whole life. I have two children but im thinking on suicide. I dont want to live like this… i talked with my psychiatrist but they dont understand me. Really healthcare in Belgium is really fucked up. By the way i am 31 years old, i was an active pro sporter.
All this shit started when i went to Bali and had a parasite infection ascariasis. After this infection im not the same anymore. My guts are dead i think, really people of 70-80 years old live better then me. I dont know how to explain it better. I cant do anything, i have lost 15 kg and im so tired every day and always the pain cramps like hell.
Could it be that biopsy’s are wrong for Inflammatoire bowel disease even if they took 10 biopsies?thanks a lot. I tried a gluten free diet but that didnt go well. I was first misdiagnosed as celiac patient and have eaten for 4 months glutenfree and it was really awful. I had only constipations and after that explosions of diarrhea. Really i did everything to get lost of this jut nothing helped. I did a fodmap diet with a special dietist, glutenfree, i have ate no carbs almost a huge time. Nothing but nothing helps. I dont get it how they cant diagnose me and keep saying you have IBS. If this is IBS i think im in the Whole world that has such huge of reactions. Im doing my last businesses for my childrens future and i think after 3 months i will remove my colon or a temporary stoma on my own decision. Like a said, today yesterday almost everyday im dying. People that know me say that i have changed tremendously physically but also mentally. 
Oh, my... I hate that you're experiencing such pain and misery! On a good note, many people do find relief through surgical means. Maybe this will work for you. I know in our community, here, some of the advocates who have had surgery have written articles about it. So, please check out what others have to say about surgery and recovery. Then, please, PLEASE consult with your physician. Please stay in touch and let us know how it goes. Your journey is important and valuable. Hugs for a pain-free day! --Traci, UC-IBD, Team Member
am so sorry you are experiencing this it’s so hard to explain to people the pain an frustration you go through my friend has been through the same symptoms you have experienced and her colonoscopy come back clear also which left her feeling frustrated because you just want answers I would keep on at them because either way it’s not normal that you are going through this, I was diagnosed with ibs at 18 because I “complained” to much i got to the age of 31 to finally fight back and a new dr I seen couldn’t believe I was told it was normal to bleed with ibs he sent me for the test and I was diagnosed with uc there and then don’t let them make you think it’s normal. yes i know, i want to see another doctor but the problem is, always when i go
To a doctor they all want to do a coloscopy. The coloscopy is so f*cked up, eacht time i become very but very bad. And still they do not find anything. My only motivation is the CT scan that shows a bowel thickness and the radiologist speaks about rectocolitis and even colitis in the colon descendens. Now i have read that there are different types of colitis, not just colitis ulcera but also in the wall in the lamina propria. They called different. I actually do not understand the biopsies they took, why cant they find anything. If there is nothing, why do i have pain on that place always, why does the CT scan shows then a bowel thickness? I dont get it really. I am so frustrated. My normal doctor told me to use enterol as probioticum. Now i used this 2 days and guess what, today i was dying almost of the pain. 2 f*cking hours on the toilet with a lot of pain! I dont understand it anymore…
Anno 2022 and no doctor can help… frustrating..
Hi
I'm too am sorry to hear everything you're going through but as you can see we all can relate.
The first thing that jumps out to me is you said the bowel wall thickness was 4.5-5 cm, is this correct? If so, that is extremely inflamed to me.
The second is the low calprotectin at 10 usually is a sign of IBS or viral infection.
And third, have they tried a small bowel follow-through? If the problem is higher up in your small intestine then a colonoscopy might not see it.
I know it can be very frustrating to get a diagnosis, it took more than 6 months and many doctors to get mine, but maybe ask for different testing and not always the same ones. Something like, "is there anything else we can try?" It's funny how your blood work can sometimes show "normal" but you know it's not.
Whenever I was in severe pain, I would switch to a liquid diet for a few days so my bowels could rest, and that sometimes worked for me.
On a side note, I too thought about suicide because of my disease and did try (pills) but I am here to tell you that I am glad it didn't work. I have had Crohn's for more than 30 years and while my life is not what I expected, I am glad to be here. I would not have met my wife and have my two boys otherwise. Talking to someone is the best medicine.
I hope things will get better soon
Vern - IBD Team Member
