Seeking advice and answers

[XoBuBbLeSoX]

Hi,I am seeking advice and maybe some answers.Please read my story.Please don't be offended by the nature of the information provided.I worded things the best I knew how to.

I am 22 years old.I have been suffering since I was about 15 years old.When it all started I was what I considered healthy for the better part of my life.Other than weird skin rashes as a child.Nothing seemingly out of place.
My first real symptom that anything was wrong, was a burning sinsation in my abdomin.It would burn to the point I'd double over in pain and last for hours and even sometimes up to 2 days.I seen a g.i. who gave me some acid reflux pills.When that didn't kick the problem we did a barium xray.The one where you drink the chalk lol and they take pictures.Nothing there seemed wrong so they wanted a colonoscopy,which I refused to do(stupidity).They slapped IBS on as a diagnosis,and said I'd be fine.IBS seemed like the right diagnosis to me.My symptoms revolved around eating eggs and suffering from horrendous abdominal cramps and diarrhea.The bouts would last a few hours to an entire day.The defecation always took away the pain in the short term until it was time for another.My fix for it: stop eating eggs and drink pepto.I was fine by that for years until I turned 17.

At 17,the symptoms revolved now around eggs,Mc Donalds meats,Sausage and Bacon.I decided to void those from my diet also and continue on as I was.

At 21,my world collapsed.My left eye got cloudy and blurry to the point all I could see was a big white light in front of my face.I seen a cornea specialist who diagnosed Uveitis and gave me Neopolydex drops and my vision slowly returned to normal.(later on I found out IBD's can causes Uveitis)

Shortly before turning 22,I was hit with the worst of everything.Now I need answers!I can't do anymore.4 months prior to turning 22,my stomach problems took a huge turn for the worst.How much more could I take,I started to wonder.Thinking maybe I should just give up on life all together.The bouts of diarrhea and stomach cramping and pain got more intense and now hot dogs were a whole new cause.So,I stopped eating them.Then ground beef became a cause no more than 3 weeks later.Hot dogs always causing problems,ground beef was a 50/50.I started to realize a few weeks later that just about anything I ate became a problem.My solution:drink pepto all the time,mostly just to get through the work day;without occurance.My whole life revolved around these issues and constant pain.

Fast forward 2 months.I just turned 22 at that point.New symptoms again.Bowel movements up to 6 times a day without diarrhea(because of pepto overuse).The bowel movements were a sludge or paste like texture half the time and black in color. few weeks after that started,I noticed a strange new pain.I was laying on my bed watching TV with my boyfriend and got a few huge jolts of pain in my nal area.Right above the anus.It felt like stabbing or punching.Horrendous!Now those pains have not stopped,but now come in waves of jolts of pains lasting a few minutes at a time about 30 times a day it seems.Back after it first started I was rushed to the e.r.Just when my symptoms subsided some on the diarrhea and cramping scale.I had a bowel movement solid and normal in color but occompanied by bright red blood drops in the toilet.I didn't panic...yet!Until 30 minutes later...I went to have yet another BM,and was amazed that when I tried,nothing but bright red blood came out.

The e.r. doctor told me to follow up with a g.i.He heard about my symptoms,and thinks it's Chron's.BUT I don't have insurance!!!!The next day at home I bleed bright red blood twice more.Then everything is normal again! I seen a family doctor who did some stool tests,and no parasites yay...but no g.i. either.He prescribes Immodium like a stupid and leaves it be,due to my lack of insurance.

So,I return to the e.r. 3 weeks ago now.I was in the middle of a diarrhea and cramping bout and I wanted answers.I was getting them this time...or not!They amit me and do a ct scan with dye(intraveiniously) and contrast I had to drink. It shows mural and mucousal thickening of the small bowel and loops(and whereever your ileum is)...w/e that means.Also that my ileococal valve is slightly opened.
I left the hospital with records,x-rays,and tests in hand after a 4 day hunger strike they made me go on by refusing me food.I now weigh 90 lbs...not healthy at 5 ft 4. I had lost 10 pounds in 4 days...I blame lack of food and lack of diarrhea control while they kept me in the hospital.I had to go home. I tried finding an outpatient g.i. instead of being in the hospital,and was successful in finding a g.i. to see me spet.12th.

Tests need to be ordered and reviewed for diagnosis...which means money needs to be spent.Which means this will take alot of time to get from where I am to a diagnosis.Just wondering if anyone knows what I can be doing in the mean time diet wise etc..to put back on my lost weight and to help heal my bowels..
Also did anyone else have these symptoms?Or similair ones?If so,which IBD did you get diagnosed with?I'd love to research further which one I could be.
Thanks everyone and once again I appologize for the vulgarity of what I call my life story.

 

[teeny5]

Mine started as gradual stomach upset, then heartburn and an acidic feeling. Later I got the bad cramping. Only had blood for two days and figured it was a hemorroid or something. I finally went to the doctor when I had been doubled over with stabbing pain below my belly button. It would come in waves of pain and then go away. I could also feel like a tightening down there too when I was cramping. At first I thought it was gas or I had to go to the bathroom, but then I had them even when I didn't need to go. I too had a ct scan and an upper GI. After the colonoscopy they said they suspected Crohn's. Still waiting for my blood test to come back that is supposed to tell for sure I guess. They suspected Crohn's because I have skip lesions...meaning I have diseased colon, then normal, then diseased again. My anus is not affected at all. From what I have heard it is really hard for them to tell if it is Crohn's for sure sometimes and can take a long time to diagnose. My GI said that the treatment is similar for Crohn's and Ulcerative Colitis and gave me pamphlets on both. He said Crohn's is worse...it has more complications. Hopefully I will find out soon for sure which one it is...but I believe it is Crohn's.

Haven't found a good way to gain weight yet...still under 100lbs myself. I do drink 3 Ensure Plus drinks a day, but so far have only put on 10lbs...could use another 10 at least! I just avoid anything greasy, fried, fatty, sugary, overly salty, and spicey. Oh, and I can no longer eat beef either...makes me ill for days!

Oh by the way...don't worry about being vulgar. This is the only place where we can all talk about our symptoms comfortably with others who know what we are going through. Take advantage of it!

 

[ozguts]

I'm sorry to hear that you are suffering so much. These digestive diseases really create a lot of fear and indignity.

I've been diagnosed with Coeliac (celiac to North Americans), IBS, and finally last year, Crohn's of the small intestine after a double balloon endoscopy (which goes furthur up the small intestine than normal colonoscopies). Your symptoms could be any of these. For the coeliac you need to do a blood antigen test which may indicate if you have it, but a colonoscopy/gastroscopy is the best way all round to go to find out what is wrong. Blood is not usually associated with IBS.

I too get blood from hemrroids(sp?). Bright red in the stool indicates the bleeding is in the large intestine, wheras black (and smelly) indicates further up. THe black sludgy stool can also be caused by the Pepto though.

Food wise, it can be different for different people. Obviously if you have coeliac disease you need to stay off gluten and be aware of the many hidden ingredients that have it as well as cross-contamination. Many of the foods you talk about are processed meat that have preservatives in them and are high in fat. Neither of those are generally good for digestive systems that are having trouble.

Oils, fats, dairy (of all sorts), spices, sugars and even some heavy fibre can cause discomfort as well. For some with IBS rather than IBD, fructose (natural sugar found in fruits and some grains) can cause problems too. Lactose (from milk) is a sugar often not tolerated in many people.

The thing about food is that you can guess and limit yourself so much (I was once on a juice only diet that made me lose so much weight I ended up in hospital trying to figure out what to do) that it is more harmful than help. In your case I'd stay away from fatty foods (like ground beef) and processed food (like hot dogs, bacon, etc.) and perhaps have soft well cooked veggies with your protein and carbs. You really need to discover the root cause of your problem through colonoscopy and maybe even a pill cam if you can get one.

Keep on trying...it isn't fun but that's what many of us have to do...I'm onto my 5th gastro in a month trying to get better relief for my symptoms....after 10 years of this and its limitations I'm beyond frustration too. Appreciate any time you can!

 

[XoBuBbLeSoX]

I'm hoping against Crohn's but know it is probably my diagnosis after I've read more about it and complications it causes...most of which I have.Joint pain,Uveitis, Malnurtrision,etc... What are the best tests to request, considering that from my ct scan I know it is my illeum and small bowel loops that are mostly affected.?. Would a colonoscopy even detect anything in the small intestine?

 

[Isla]

Most colonoscopies can take a look at the terminal illeum; however they cannot see the small bowel. Only way to physically see the small bowel is through a pill camera.