Hospitalized and at a loss

[Manda]

Hello!

My name is Amanda, and I was diagnosed with Crohn's disease in 2009. I was a senior in high school at the time, and have been unable to manage it. I have been on Asacol and Pentasa, along with Entocort and another that I forgot what was and they have never made a difference. I am currently on my way to trying Humira (I have a hospital follow up appointment on the 5th with my primary, and on the 8th I have an appointment with a NP in my GI's group to get me on Humira).


I am currently a senior on my final semester in college, and Crohn's seems to be taking over my life. I was hospitalized last week (3/19) until 3/25 for a partial obstruction and they found I had C Diff. They treated me for the C Diff only, with Flagyl and once my pains went away from the partial blockage I was ok'd to be released. Then I come home on Easter Break, and the pains are back and there I go in an ambulance yet again to a different hospital where I undergo the tests yet again (It was 11pm at night and they did not have access to my records). In this hospital I am being treated for C Diff (Flagyl) and the IV form of prednisone (I forget what it is called..). I am no longer experiencing the intense waves of pain, and I am passing gas but not a significant amount. I had my first bowel movement in three days a few minutes ago, so I am sure they will test me again for C Diff and we'll see what happens with that..

I was hospitalized on the.. 28th (I was awake all night and it messed up my days)? and here I am still today. I experienced what I'm sure was a partial blockage on March 11th and the few days prior and after as well, but I did not go to the hospital because I was visiting my dream graduate school in NYC. It slowly passed, and I thought all was well.

Before March, I had never had a blockage of an sort, and I don't know why they are happening and one after another.

My problem is, how do I prevent these for the remainder of college? I really have no idea what my diet is supposed to be, I have tried foods and sometimes they are ok and sometimes they are not, and I see some people say mashed potatoes are a staple and others avoid them completely. I don't know what to do, and I have a very limited budget because I have missed so much work & am a full time student (I only work about 10 hours per weekend at a sit down job). I don't have a lot of time (or energy) to cook. I have decided that due to my health I am going to take a year off and try to get everything so I can do well at Graduate school.

Plans during my year off are to work at a sit-down bookstore job in a small town (Something I am physically capable of and enjoy), bake for the local farmer's market, and raise two chickens so I can eat eggs I have raised. I think during this time I can really figure out my diet and improve my health. I just don't know what to do currently, to prevent my missing any more school & get through finals.

 

[Trysha]

Hello Manda
Sorry to hear you are having a difficult time and hope things will soon improve for you.
Has your GI discussed all the parameters of Crohn's like lab tests of blood for
inflammatory markers (ESR,CRP) white cell counts, vitamin levels iron levels etc.
These will help with a full diagnosis.
It is possible to have C.difficile as well as Crohn's.
It does sound as if you are having a crohn' s problem at the moment.
Hopefully the docs will be able to resolve things for you.
Feel better soon
Hugs and best wishes
Trysha

 

[Manda]

Thank you Trysha

 

[Sarah50]

Hello Manda,

I'm so sorry for all of the pain and frustration you are going through! I hope you'll be able to sort this out and feel better soon. It's frustrating, to say the least.

I will offer up what worked for me - which is why I share it. There are several diets to follow that seem to clear up the symptoms, so check out all possibilities and see what works for you.

My doctor put me on a low residue / low fiber diet because I have a stricture in my small intestine. After 6 weeks on Asacol AND the low residue diet - ALL of my symptoms went away (bad pain every day in my lower right abdomen, extreme fatigue, loss of appetite and weight loss, night sweats almost every night, off and on nausea and vomiting, flu like symptoms and just felt like crap for a couple of months).

The low residue diet makes complete sense to me since it is very easy on the intestines - you're eating food that is very easy to digest. I know for a fact that it works because when I've eaten food not on the diet - I paid for it with that same intense pain for a day and a half! You having problems with an obstruction may possibly mean you, too, have a stricture. I have researched this a lot and the low residue diet is definitely recommended. You will still have to see if any particular food bothers you.

I found that when I'm flaring, drinking more fluids and eating less solid food helps get over the pain faster - like drinking protein drinks for breakfast (with lactose-free milk and a banana). vanilla milk shakes, etc and soft food.

Here's a link to one of the low residue diets in case you want to check it out:

http://uvahealth.com/services/digestive-health/images-and-docs/Low_fiber_Low_residue_diet_3.pdf


Good luck! Hang in there... it will get better! :rosette1:

 

[Ya noy]

 

[Sarah50]

Manda,

I thought I would include these tips on flaring that I found while researching:


Diet Recommendations for Crohn's Disease Flare:

Follow a low residue diet to relieve abdominal pain and diarrhea.

If you have strictures, it is especially important to avoid nuts, seeds, beans and kernels.

Avoid foods that may increase stool output such as fresh fruits and vegetables, prunes and caffeinated beverages. Cold foods may help reduce diarrhea.

If you havelactose intolerance, follow a lactose-free diet. Lactose intolerance causes gas, bloating, cramping and diarrhea 30 to 90 minutes after eating milk, ice cream or large amounts of dairy. A breath hydrogen test may confirm suspicions of lactose intolerance.

If you have oily and foul-smelling stools, you may have fat malabsorption. Treat fat malabsorption by following a low-fat diet. Discuss these symptoms with your doctor or nutritionist.

Smaller, more frequent meals are better tolerated and can maximize nutritional intake.

If your appetite is decreased and solid foods not tolerated well, consider taking nutritional supplements (see section on recommended liquid supplements).


http://www.ucsfhealth.org/education/nutrition_tips_for_inflammatory_bowel_disease/index.html

 

[Manda]

Thanks Sarah50, this is helpful!