I feel very frustrated. If you could, please share advice

[ymny123]

Hello, I hope everyone readings this feels relatively fine.

I have been diagnosed with "mild Crohn's disease" of the small intestine in June 2015. I feel as though my lifestyle has been steadily getting worse and worse and I cannot begin to understand what to do.

I want to make this terse so that people will read - I hope I am successful:

I begin my day around 6am by drinking around 15 cups of water within 20-30 minutes and then contorting myself in the most uncomfortable way so that I could pass stool. This has to be done while squatting on the floor or leaning my head against the wall or contorting my torso so it presses the "right way" against my bowels (this "right way" changes depending on the day).

After about 45 minutes in the bathroom and a large volume of stool passed, I begin my day. I often am not hungry until around 10am or so and will wait till 11am to eat.

After my first meal (and second meal, as well) I feel extremely bloated, very tired and irritable. I cannot fathom trying to get anything done; I sometimes get so groggy I feel that I can fall asleep. If I contort myself in the right way, I will eventually pass some more stool which will immediately relieve all symptoms until the next meal (around 4pm).

At this point, I am done with bathroom trips. At night (between 7pm and 8pm) I can eat whatever I want and I feel fine.

The whole process repeats the next day. Some days are better some days are way worse - with the need to go coming out of nowhere and stealing all energy until I go to the bathroom (sometimes for a very small tiny amount of stool).

My symptoms are exacerbated when I eat highly fat foods (PB, desserts, mayo, fried foods, etc.) and my GI put me on digestive enzymes (Creon) which helped with some absorption but not with the symptoms above.

I am at a loss! I am taking Pentasa for the pain (which certainly eliminated the pain I originally had) as well as Creon. I also in the past tried Xifaxan (didn't help), Questran (didn't help), and several probiotic brands (didn't help).

I feel as though I haven't seen anyone with these symptoms and I want to know your take and if you have any advice. Please please help, I spend my time in the bathroom crying and trying to determine what new food has triggered this awfulness.

I have already eliminated: dairy, eggs, highly fat foods, highly fibrous foods, and tomatoes.

Any advice will be VERY much appreciated.

Thank you for taking the time and please let me know if I could ever return the favor.

 

[JenS]

I have no advice, sorry! What does your doctor say??

 

[ronroush7]

I was on Pentasa for a short time and then my doctor switched me to Lialda. Have you tried Tylenol for the pain? Last year my doctor thought I had ibs as well as Crohns. Because of that, he prescribed levsin to deal with spasms of pain. I hope you feel better soon.

 

[Trysha]

Hi,sorry to hear you have such problems and hope there will be a way to help you feel better.
That is a very high volume of water to be taking all at once and is not really a good thing to do.
If I read you correctly that is about 3 litres of water if measured by a standard teacup or mug.
There is such a thing as water intoxication which will do no good...and could be harmful.
Have you discussed this with your doctor...it is something he should be aware of in order to help you further.
It does rather sound as if your illness needs further control ......and that can happen to all of us at times.Crohns can be very unpredictable in the pathways it can take.
I would suggest a visit to your GI to ask further help in bowel regulation.
It may be that more fibre is needed in your diet which could be helpful but not something to undertake without discussion with your doctors.
Feel better soon
Hugs
Trysha

 

[caretothepeople]

Keeping a food log and tracking you symptoms is something to try. It sounds like you have a good sense of what you're consuming everyday. Writing this down can provide something to review with the doctor who can work with you to see if there are patterns and talk about other treatment options and things to try.

When you see your doctor again, some examples of things to ask might be:
- What type of diet should I have?
- What other lifestyle changes should I make?
- What are my options for taking treatments other than the one you have offered me?
- What future treatments will I need?
- When should I start to feel better and what should I do if I don't start to feel better by then?
- Do you suggest I work with a dietitian or a nutrionist? If so, who can you refer me to?

Hope this helps. As others have mentioned, getting the treatment right can take awhile since Crohn's is so different for everyone. It sounds like you're being proactive about making changes and trying to find what's right for you, which is great. keep it up and stay strong!

 

[Liza123]

Hi!
Have you gallbladder tests done? What about food sensitivities like gluten the sugar test and breathing tests for h pylori?
I think you need more testing. This can't be as much as they can help you!

 

[lacey2]

Hi, has there been a resolution to the problem? Good Luck