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So I am hearing alot of the same symptoms I have on this board.  I have been having tests run for the past 4 weeks, but everything is showing normal so far.  I have terrible diarhhea, bowel incontinence, terrible cramping, loss of appetite, and weight loss.  I have had symptoms for about 5 weeks now and have lost 25lbs.  I work full time so I can't eat food before or at work.  I have a shake for breakfast and soup for lunch since I know I won't have to have a bm at work.  For dinner I take bentyl and then eat a low calorie, low fat, low fiber, non greasy, non-fried food.  Usually baked or grilled chicken.  Then I get really sick, usually all night, and then go to work absolutely exhausted.  I used to eat at least 3,000 calories per day and now I am down to about 800.  I find myself not wanting to eat because I know the cramps will be so bad and I will be up with diarhhea.  THe bloodwork for and infection came back normal.  My electrolytes are normal, the ultrasound on my upper abdomen  liver, pancrease, gall bladder and right kidney were all normal.  I am waiting for my stool culture to rule out parasites then I go for a colonoscopy.  I am going crazy waiting and I want an answer and a solution.

Everyone thinks I am doing it to myself from stress.  (My husband and my GP) I am an accountant and this is audit season.  I have 2 children 18 mos and 6 mos.  My husband and I are struggling to make time for each other and I need some way to vent about this.  I am glad to find this board to at least let me know I am not alone and other people live thru this so I can too.

 Reply posted for kfitz.

Its like reading my own story - exact same symptoms. I also had crippling nausea that could never be relieved by vomiting. It NEVER went away. I feel for you and I don't have much advice to offer because I got about 50 different diagnosis's before they settled on Crohn's.

Regardless of what they are putting your through right now - always follow your body. Find yourself a safe food and stick with it. If you have a good day, add something healthy to eat with the safe food. Take vitamins, and try your best not to dehydrate yourself (water used to make me ill, too). Stay away from foods that are creamy or "sticky". It takes awhile to get used to the rhythm of your body, but once you get it, life gets better, I promise!! It won't always be like this <3

 Reply posted for kfitz.

Hi,

I totally understand what you are going though! It took a long long time for me to finally get the crohns diagnosis.  I did everything i could including doing naturalpatic things that did not work.

I would get the colonoscopy and endoscopy. Also a x-ray of your intestines.  (they make you drink this barium stuff its not fun).

Also when they do the colonscopy get them to biopsy your intestines for celiac disease b/c you can get false negatives from the blood work.

I didnt start feeling better until i started imuran and humira. 

I tried pentasa as well....helped a bit but not alot.

I did not have typical "crohns" symptoms in that the doctors kept saying oh its probably irribital bowel syndrome..... then the gastro doc said "IBS is BS" and there is usually a reason you have those symptoms. But she still wasnt sure about crohns b/c i never had blood in my stool and i dont get much cramping and pain. I just always had diarreah. I would eat and instantly go to the bathroom. I lost 18 pounds before my family doc referred me to the gastro.

hope you feel better soon, even as hard as being told you have crohns i felt relieved to finally have an answer.

 Reply posted for kfitz.

I'm not sure what your day-to-day diet is like, but I know what has helped my daughter is smaller / more frequent meals and small snacks in-between.   My guess is that her system never gets an "overwhelmed" feeling and is able to better digest / absorb the nutrients.   Be kind to your gut, keep things simple.   Good soups (if you can't make your own, then go for one that has the best nutritional label-staying clear of the creamy ones) and have a couple small servings throughout the day.  Mashing up a banana, applesauce (if you can tolerate) yogurt - that I know they do have lactose free and organic.  My daughter isn't lactose free, so we are able to make high cal/protein shakes, but that may be too much for you right now.   Jello.  Sometimes I even mix-in a fruit cup.  

Sorry you are having such a hard time, but things will get easier. 

Lizzies Mom

 Reply posted for tconley.

Thanks for the words of support.  The GI is running more tests and I have a colonoscopy scheduled in 2 weeks.  I am off milk and he tested me for Celiac disease and is re-testing my thyroid since my dr just changed my dose.  I don't know what will come of the bloodwork, but I hope he finds an answer by the end of March.  I just want to know what I can do to feel better.  I don't think I can make it thru work with the pain getting as bad as it has been this past weekend.  I was able to get about 1000 calories in me on both Saturday and Sunday so maybe I will at least have more energy.

 Reply posted for kfitz.

I totally understand what your going through. It took 4 mos for my primary dr to refer me to a GI specialist. I had no idea what was going on. I couldn't work from all the abdominal pain I was feeling. She did x-rays, said I needed to clean my system out with a laxative. There was still pain. I had no energy at all.

Finally, I got a colonosopy & I was dianosed with crohn's. This was 2008. I had to have emergency surgery and have part of my small intestine removed. I had never heard of this disease before.

It's supposed to be hereditary, but my mother or father had it. Nor did any of my 8 sisters or brothers had it . Guess I'm the lucky one.

Well on the positive side, I am 44 yrs old, I live a normal life. I work everyday, workout when my schedule allow me too. I have 3 kids and a grandchild.

Most important thing (in my opinion) stay on top of the communication with your dr. Eat healthy & stay educated on the foods & medicine and how there effecting your body. Everyone is different. sorry so long.

Wishing you all the best.

 Reply posted for kfitz.

You can definitely live through this.   Getting diagnosed takes everybody a different amount of time.   No two stories are the same.   My daughter for instance....it took 4 yrs.!  The docs just wouldn't listen and we had our share of hospitalizations/misdiagnosis during that time.  

I would suggest you take a deep breath and get the colonoscopy/ endoscopy.   But know that even then, they may not have enough to give a definitive diagnosis.   Also, try (I know it's hard, especially w/two small ones) to de-stress.   In the meantime, you can check out a few books from your local library.   Many have been mentioned numerous times on this site, and start educating yourself w/the possibility of IBD.  

Best wishes,

Lizzies Mom