Still undiagnosed, can anyone help me

[clover445]

Hi guys

Some of you may remember me, its been several months since i last posted.

Things havent changed much only that my pain on my left side has increased and is becoming more frequent. The best way I can describe it is a deep, dull, gnawing ache. I wish I could describe better how I feel and I wish there was more of a pattern. I have days, even hours where I feel like ive been run over by a bus, I just lie on the sofa shivering with every bone in my body aching. Then I have days, moments where I feel like a normal, healthy person.

Since posting I have been diagnosed with lactose intolerance and I have to admit that since changing my diet my diarreah has improved but its still there sometimes several times a day, sometimes I cant go at all. Sometimes theres blood, sometimes there isn’t. Sometimes I feel ill but don’t have pain and sometimes I have pain and don’t feel ill.

I have had a SBFT, a CT scan, pill cam and MRI scan and two colonoscopies. Everything has come back normal except the colonoscopies, they were performed by two separate consultants who both got stuck at the first turn. Splenic flexure I think? They both said it was kinked and completely closed off. The biopsies they did managed to take showed mild inflammation but nothing specific. Before the colonoscopies I did not have pain on my left side it was all on the right, now most of my pain is at the site of the kink. I just feel so disheartend im desperate for it to show up on other tests but it doesn’t and I don’t understand why. If its so kinked the scope cant get through why isn’t it showing on anything else?

I am scheduled for my third colonoscopy next Thursday to see if the consultant can get any further but he doesn’t think he will and im so frightened Ill just be told its IBS and my bowel is going in to spasm and be left to get on with it.

Im sure IBS is a horrible condition but would my bowel really kink that much with it and would I feel so poorly at times?

I feel so alone, I hate talking about it to people that don’t know how I feel because I know they just don’t understand. Sometimes I feel like people think im a wimp or a faker when all these tests are normal but I know in my heart of hearts something is wrong.

I cried my eyes out in my last consultants appointment as he started to suggest my problems were lactose intolerance and I know that’s not the case. How can I go weeks sometimes a couple of months at a time feeling ok and then bang, a bolt out of the blue it hits me despite me not changing my diet.

Don’t get me wrong my consultant is great but there are only so many normal tests I can have before he says “your normal, go away”

Love a very deflated Clover
x

 

[Cat-a-Tonic]

Hi Clover, I don't remember you from your previous posts, so nice to meet you!

I'm also undiagnosed, and I have been told in the past (by a bad doctor) that I have IBS. But if you look up the diagnostic guidelines for IBS, it specifically states that if you have experienced any of the following: Dehydration, weight loss, nocturnal diarrhea, or bleeding - then you do NOT have IBS. Since you said you sometimes have blood, you most likely have something else going on, but your doctor would have to make that determination for sure. Don't give up, get a second opinion if your doc can't find anything. Like I said, I'm still undiagnosed too and I know it can be so frustrating to have test after test and still have no answers - but I also know that I WILL have answers someday, and you will too. Try to stay positive (I know, easier said than done sometimes). Good luck to you and keep fighting for answers.

 

[Rossy]

I have had a SBFT, a CT scan, pill cam and MRI scan and two colonoscopies. Everything has come back normal except the colonoscopies, they were performed by two separate consultants who both got stuck at the first turn. Splenic flexure I think? They both said it was kinked and completely closed off. The biopsies they did managed to take showed mild inflammation but nothing specific. Before the colonoscopies I did not have pain on my left side it was all on the right, now most of my pain is at the site of the kink. I just feel so disheartend im desperate for it to show up on other tests but it doesn’t and I don’t understand why. If its so kinked the scope cant get through why isn’t it showing on anything else?

Hi, sorry you're having such a rough time.
It does seem that you have had a battery of what would be the proper tests to get a diagnosis.

Colons do, mostly, have a couple of kinks due to the change of direction and its not uncommon for the scope to have problems at these 2 areas. From my experience we are always warned that we may have to be turned over, or for even one of the nurses to apply pressure to the body, to help the scope on its way.

Any colon being completely closed off is a medical emergency so I wonder if there choice of description was perhaps just innappropriate?

I also think that most experienced GI doctors, whilst relying on biopsies, can make a general diagnosis by doing the colonoscope alone, by vision.
Your mild inflammation must be being caused by something so i'm surprised they haven't elaborated on that, does lactose intolerance cause that?

Anyway, good luck with the next scope, I hope you get some answers.

G

 

[Crohn's 35]

HI Clover I do remember you, sorry you are having a rough time of it. As mentioned so many times in my posts, Crohn's disease is so hard to detect... it is like "catch me if you can syndrome and you have aches, pains, blood, spasms, and they are part of IBD as well as lactose intolerance. I would cut out any lactose foods or dairy, see how you feel. I have a spastic colon and it is very present in the left side, my right has ulcerations. Took me a full year or so for tests and more tests and so sick, vomiting, hospitalisations to get finally get a dx. But I had to go to Toronto to a teaching doc and he saw my weight loss and the fact I was on pain meds. IT led to my first resection. Many people on here are not diagnosed, and they have to continue in pain until they do. Hope you get answers soon. Try not to be gone so long, because we are here and understand where you are coming from, big hugs!

 

[Jer's Girl]

Hi clover! It took me forever to be diagnosed too. My family Dr told me I had a “nervous stomach” as if that was a diagnosis! He also told me that I was having fainting spells because “girls brush their hair upside down and pass out.” Huh? Finally my mother took me to the Dr one day when a sub was in for my normal Dr and they figured out that I had Crohns right away. Sometimes it takes finding a new Dr to get a new perspective.
Hang in there and welcome to the forum. You will soon find that you are not alone it this.