Newbie

[madollimore]

Hi there everybody!

Here is my story.

All my life I have had bowel problems. Been diagnosed years ago with IBS. Every time I've complained to my doctor, I've always been told its your IBS acting up!

I am now 40 years old and my symptoms in the last few years are progressively getting worse.

On Febuary 13th of this year I was admitted into the hospital. I had severe pain on my left side, vomitting, and NO bowel movements. After a CT scan with contrast, I was admitted into the hospital with a diagnosis of Diverticulitis, which I didn't know I had. I had a severe infection in my sigmoid colon. I was given IV antibiotics, pain meds and only allowed clear fluids. This continued for 9 days. On day 4 it was brought to the doctors attention that my veins kept collapsing. I was then given a picc line to administer meds into.

I was released from the hospital on day 10 and sent home with home care and IV antibiotics and pain meds for another 2 weeks. Once home I was still having symptoms (which I will mention later) and my arm started to hurt terribly. Back to hospital, given an ultrasound of my arm.....and told I have 2 DVT's (blood clots). So the next 2 weeks were spent going back to the hospital every day to get my INR checked and to be given warfarin.
Now my family doctor keeps an eye on my INR levels and changes my doses accordingly.

Now, the surgeon who admitted me for diverticulitis has seen me for a follow up appointment. I have told him my symptoms, and he doesn't feel its another flare up of diverticulitis. He has booked me for another CT scan with contrast (april 9) and a colonoscopy with biopsy (april 17).

One question I have is: Could I have diverticulitis and crohns? or colitis?

Here's a list of all of my symptoms that have escalated in the last year:

abdominal distention
abdominal pain, tenderness, and cramping
blood (small amount) and mucous during bowel movement (sometimes no stool just mucous and blood)
diarrhea and constipation
frequent bowel movements
pain in abdomen after eating and cramps
severe urgency "to go" comes out of nowhere
severe pain in my joints
raised red rash on legs (sun makes this worse)
swelling in my eyes occasionally and very dry and gritty
exhaustion
feel hot, but have goose bumps and the chills at the same time
Nausea and weak
loss of appetite most days
cold hands and feet
nights sweats
Low B12
DVT x2 in arm
told i have a fatty liver
recent blood work showed an elevated ESR level range (0-20) mine 34

I have a hard time believing all of this is related to diverticulitis, especially when I am still having these symptoms and doc feels I am NOT having a diverticulitis flare up. Really need some input please! Are these symptoms familiar to anyone? Could this be Crohns?

 

[mickey]

Could be many things..however, I would immediately look into probiotics (a good one). Since you have been on antibiotics, etc. it would help balance your belly. Your colonoscopy should help get you to the bottom of this (no pun intended). I am sure they will do blood tests, etc....feel better!

 

[PVail]

Hi There , Sorry your having a rough time of it . Its very frustrating not getting properly diagnosed. I have very similar symptoms to you as I suppose we all do . Fresh tests should shed some light on your situation. I find it hard to believe that doctors still diagnose IBS as this usualy mean no meds or just over the counter stuff that any could guess at. Get an appointment and voice your concerns at least to rule out any theories you may have about Crohns and get some facts. Having long term symptoms is very hard on you . You should look on th Undiagnosed Club Forum here as there are many in the same situation . I was only DX last week after years of problems. This forum can be a great help .

 

[Angrybird]

Hello and welcome to the forum. Your symptoms are the same to those experienced by someone who has an IBD like crohns so I am glad that you are having further tests that should hopefully be able confirm whether or not you have it - the scope with biospies is usually the best test to have done for this even though it is not overly pleasant.

I hope you can get the answers you need soon and definetly check out the above mentioned forum: http://www.crohnsforum.com/forumdisplay.php?f=75.

AB
xx

 

[madollimore]

Thankyou, and yes....sad to say but I was "excited" to be booked for the colonoscopy finally!!!....how sad is that? I just kept thinking finally MAYBE this will show something and it will be confirmed its not all in my head.

 

[Susan2]

Join the club! Many of us have been excited to find that we have a condition that no-one knows the cause of and that can't be cured. :ybatty: But it's just such a relief to to know that, as you say, it isn't all in our heads, and to have it named.

 

[David]

A very sincere welcome to the forum I'm so glad you found your way here.

As others mentioned above, it definitely sounds like some form of IBD. Let's hope not, but if it is, at least you'll finally get the treatment you should have had all along.

Out of curiosity, what was your B12 level and are you supplementing for it?

Again, welcome

 

[madollimore]

Hi there David, and thankyou. My B12 level was 100. And yes I am taking 1000mcg of Vitamin B12 sublingual tabs.

 

[David]

A B12 level of 100 is extremely low as you probably know. My rather educated guess (goodbye modesty ) is that your 1000mcg sublingually is not going to be anywhere near enough to get your levels into a healthy range UNLESS your deficiency was due to dietary causes (such as you being a vegan). How long ago were you tested? Having levels that low can lead to a whole host of problems that you're already likely experiencing and it can get a LOT worse. You want to get your levels HIGH (above 500!) so that damage can be repaired before it becomes permanent. If it was up to me, you'd be getting loading doses of injections until we could figure out WHY your B12 was that low.

That low of B12 combined with your other symptoms definitely points strongly in the direction of IBD. There are other potential causes but IBD is the most likely suspect.

 

[madollimore]

I was tested last aug. And i had to demand my doctor figure out why I am sooo exhausted all the time. That was the result. I've never had it tested again. I will go back and have another test done....because I am still exhausted all the time. I am not vegan and I eat pretty good i think.

 

[David]

Sounds good. I'd get it done ASAP. Get your vitamin D done while you're at it if you can.

When you get your results, please let us know and we can give advice from there

 

[madollimore]

i will....and thankyou....my doctor seems resistent to look further into things....so I don't know what tests I should be having done....if I go into his office and ask him to do certain tests he will....but only when I ask for a particular test.....I will definately get vitamin B12 and D checked....

 

[David]

If he's not willing to go beyond, "This is IBS" get a new doctor.