I'm hoping someone can help with some advice as i am at my wits end and it is really getting me down. I have posted before but it has only been the past couple of days that i am wondering if it is crohn's due to research i have been doing.
My problems started in August last year, i started getting alot of pain around my large intestine, the pain and inflammation was that bad my liver enzymes raised and my blood count was low, even though i was not bleeding. Over the next couple of months the pain moved to my small intestine, excruiating pain. I have been diagnosed with anemia twice since my stomach problems started.
In Jan this year i was rushed to hospital with a small twisted bowel, i was nil by mouth for 9 days and on Iv fluids and meds, i was discharged with no follow up appointment. In feb this year i was back in hospital, this time i had 2 dialated loops in my small bowel, again was nil by mouth.
I am in constant pain in my small bowel i have lost alot of weight, getting night fevers, nausea and cannot eat as it makes the pain worse. I have been off work since August last year due to the pain, it makes me unable to move, walk do anything! It is very debilitating. Horrible pain and the worse cramping ever along with hyperactive gruggling noises.
I had a sigmoid done, came back normal
Barium enema came back normal
Ultrasound mf my abdomen came back normal
Gastrograph follow through of the small bowel came back that my small bowel is very sluggish and slow.
Blood work came back as anemia and raised liver enzymes
I know that crohn's can affect the whole disgestive system, and i am wondering if it is this that i have. It is really depressing and like i said the pain is horrendous. I am also wondering if it is crohns it is that bladly inflamed this is why the pain relief isnt working and this is why i iam in such pain becuase it isnt being controlled. Therefore it is getting progressively worse.
I am awaiting a small bowel enema test. I am no meds just pain relief
I would appreciate any advice from anyone who knows about crohns.
Hi again Sharon, you're going to be sick of me, and I am probably not the first person you want to hear from. but it seems we are going through the same crap right now, and I have researched it alot too.
I too am suspected of Crohn's, and what you have described seems to fit Crohn's, although the twisting/looping I have not heard of, Crohn's does cause alot of symptoms, and cannot be narrowed to a list of things. What is listed on most research sites are the most common symptoms.
So what made you decide to research Crohn's? What about the birth defect with the volvus (sp?)? Last I heard you had almost ruled out Crohn's...
As for tests, the barium enema and barium swallow with small bowel follow through are the most common tests to check for inflammation, but will not always catch it. You've had most of the tests. If the barium enema shows nothing, then colonoscopy would be the next route.
The sigmoid, as it was explained to me, sometimes comes back normal as it only checks the lower 1/3 of the colon and if the Crohn's is in the small bowel it obviously cannot detect it.
You have all the classic signs and symptoms, right to the anemia, which would be caused by a malabsorption, again as a result of trauma from the crohn's/inflammation. Has your consultant looked into this? Maybe if he tried you on some of the meds for Crohn's, to see if that gives you some relief. Normal pain relievers would not help. I believe for Crohn's they give sulfasalazine for mild to moderate attacks, and 5-ASA is another one. The CCFC of Canada has a really good site, sorry I cannot post it, but try searching for it.
I really feel sympathetic, as I am having the same freaking problems, right to the nausea, deficiencies/anemia, and the slow medical world.
I have friends/family with this disease, and although it is not easy nor fun and causes alot of complications, with proper treatment/care it can be controlled.
Funny, I am actually wishing for this diagnosis at this point as then I can actually start treating it and feeling better. They have already figured out I have a malabsorption problem, and are thinking Crohn's is my problem. I know I'm sick and twisted, but I just want some damn relief at this point.
PS seems I am not pregnant and can now continue with my xrays (barium swallow with small bowel follow through)... tomorrow morning. Not looking forward to it, but has to be done. Kinda sick though, how slowof a process this is. I almost wish I was paying for it, then maybe I would get better service.
Hi Angela.....yep same crap!!!! gets depressing doesnt it!!!!
I dont know what made me research crohns. i think i have a gut feeling that this is what it is. I mean how can a person be so ill and in so much pain if it is just a defect from birth, surely it would have bothered me before i reached 30!!!
Anyway as for the twisting and looping, i found a good website and it says that because crohns narrrows your small intestine this can cause twisting, obstruction and looping. therefore i think if it is crohns my case has gone past just meds helping as it sounds like my bowel has started to narrow.The website also said that night fever is common amongst crohns disease as this is when the inflammation can reach its highest, and i get these night fevers, have done for awhile. It also said that when it gets out of control it can affect the liver and other major organs, this is why my liver enzymes have been high.
Also apprently crohns doesnt have to effect your large bowel, it can just affect your small bowel and stomach this is why the large bowel tests have shown up negative, i havent got it in my large bowel. As for the birth defect i think the consultant was at a loss, i personally dont think it is a birth defect.
I have just got my appointment through for my small bowel enema, it is on wednesday morning.
I just want some relief, i feel desperate now!!!! to the point of i will try any medication to see if it helps!!!! I'll be posting in the addiction/recovery board soon .....lol
Yeah, believe it or not Crohn's can affect anywhere from the mouth to the anus.
As for your consultant... he sounds much like most doctors, no idea what is wrong, so lets just tell the patient SOMETHING so they don't keep asking questions. Are you still seeing him? or sought another? I am still waiting on the enema... can't get me in until April 19 great medical system.
Good Luck and let me know how it goes. Here's hoping they finally figure it out as this has been way too long for you now. I mean, if it comes down to it, and you have to have surgery, I'm sure you will be fine, you seem like a very strong woman
As for the addiction. I am so with you there. LOL, Hi my name is Angela and I'm an _______ (insert med of choice). I have been on all kinds of anti-spasmodics and pain relievers, but that does nothing. Doesn't even take the edge off anymore.
Here's hoping someone who has already been diagnosed with Crohn's kicks in....
There are alot of things I'm sure they could help you out on. Although it sure is nice to know someone else is going through the testing too... although not nice to know the pain they too are suffering... At least you know somebody understands.....
I was diagnosed with crohns disease about 7 years ago.. Your symptoms do sound familiar, the pain was just as you discribed, i had to stop work, and the gurgling noises, i got those, the pain always intesified after eating, hence weight loss due to not wanting to cause pain, im not sure about the twisted bowel thing but i had an intestinal obstruction, i was diagnosed after having a laparoscopy, sorry not sure of the spelling, that is where they use i think, keyhole surgery to have a look at whats going on in your insides, i had the deseiase where the small and large intestine join together (the most common place apparently) and went on to have the infected parts removed. had all the other tests but im not sure what they were called so not sure if you've had the same but, i remember the colonoscopy, and the one where they insert a tube up your nose, down your throat, to take xtrays of the small bowel but the starting point was when i was admitted with a high white blood count, that ment there was infection in the body sumwhere... I really hope you get a diagnosis soon as its scary not knowing whats rong and you will feel so much better once you know what your dealing with.
I am having that test done on wednesday (the one with the tube up my nose down into my small bowel) My weight is that bad my bones are quite prominent in some areas now, especially around my hips and ribs.
My bloods are always coming back as showing signs of infection, but i end up being put on anti biotics and nothing else done, no follow up appointments or anything.
I have tried spasmonal,colofac,colpermin,buscupan (all for the cramping) but none of them have worked.
its annoying because i used to be so healthy, diet wise exercise wise. But now, i hardly eat and just walking for 5 mins ends in me being in so much pain.
I have had twisting, looping and obstructions of my small bowel which makes me think that the bowel wall is narrowing due to this crohn's if it is that. I cant describe the pain as much as i would like to because its very difficult to describe and so painful.
Like you said and Angela in the previous post, i just want to know whats wrong with me so i can start dealing with it because at the moment i am feeling really low and in so much pain.
I've been reading all your post and have learned sooo much! Thank you! I was diagnosed yesterday with Crohn's after a 2 year struggle with unbearable pain at night,infections, high fever's,off the chart white count's and so on- you know! Finally I get some answers.
I was wondering if anyone has a an appendectomy due to Crohn's? My Crohn's acually started with the rupured appendix then, they thought I had a "stump appendix"! Several surgeries and many hospital stay's later I've got a diagnosis. At least now I know what's wrong. Do any of you know if your pancreas can be affected by crohn's my doctor say's judging by my latest bloodwork, my pancreatic levels are off the charts! Any help or advice would be much appreciated!
Best of luck to all you fellow Crohn's sufferers!