Very Slow Recovery after diagnosis

by Kent Louis
(PA)

Good morning.

My brother-in-law was recently diagnosed with Crohn's disease. He has been in and out of the hospital ER and extended stay many times over the past month until they finally diagnosed his illness. His recovery has been very slow, and every time he leaves the hospital's care he backslides significantly and returns to the ER. Is this typical for this disease? He has become extremely depressed and discouraged and is feeling like there is no positive outcome from where he is with Crohn's. His weight loss is around 35 Lbs to date and he has no strength.

Words of encouragement from anyone?

Thank you,
Concerned Family member

Comments for Very Slow Recovery after diagnosis

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slow recovery NEW
by: Annette Young

Hello there,

Thank you for your post. Dealing with Crohn's disease is really difficult. Firstly, because it can come as a bit of a shock to simply hear the word disease and secondly, because there is no known cure for it. Treatment is therefore about managing the pain, and managing the actual condition, and trying to prevent it from getting worse. There are so many variables that it can be a frustrating and worrying time.

Your brother in law has been in and out of hospital quite a few times in a short space of time and as such it is completely understandable that he should feel down. Hospitals are not the most welcoming of places and they are not inspiring in any way. He now associates hospitals with bad news even though with his ill health he was in the right place. It is very easy for anyone with Crohn's disease to become depressed.

I have found that the more you can learn about disease, the more you can understand it,and the less hold it has over you. It is about facing up to it and learning how to manage it. Even for those people who have just endured a hospital stay, you often see patients being released and then experiencing setbacks, so in a way his reactions are quite normal.

It is important however to boost his morale and his confidence and to give him some hope for the future. There is no doubt that Crohn's disease is extremely aggressive but your brother in law can look forward to long periods of remission where his life can take on an air of normality again.

So in the meantime he has to consider how the disease affects him and what he might be doing to trigger off some of these bad reactions. For example if he is in a stressful job or experiencing stress in his personal life, or if he smokes and drinks heavily, or eating the wrong foods types, he is aggravating the disease. So he could look at how he lives his life and determines what changes could be made. He will also need to be sensible and to take the medication provide to him by the doctors and to monitor his own progress.

Some of his problems may be due to vitamin deficiency because for many Crohn's sufferers absorbing all of the nutrients from food can be difficult, so this is something that should be addressed too. At this stage, because he is getting help from the hospital the best thing you can do is to encourage and motivate and support.

This disease can make people feel incredibly lonely and isolated even within a family group so by understanding that you should be able to help more. Hope this gives you a starting point.

Kind regards,
Annette
Very Slow Recovery after diagnosis NEW
by: Lydia D.

Chronic illness is very difficult for healthy people to understand. Key features of this disease include chronic fatigue, pain, malabsorption, depression, etc. There is no cure. The medication may or may not keep the disease in check. An operation will perhaps cause the disease to go into remission, but it is likely to flare up within a year of the operation.

Organisation and compliance are very important, as is an extremely health lifestyle. If he is a smoker, then he is triggering and making his Crohn's worse. Diet can also be very important during a flare and, sometimes, even when in remission.

His weakness may also be due to vitamin deficiency and it would be advantageous if he could speak to a nutritionist who has a lot of experience with Crohn's patients. Vitamin and mineral deficiencies can cause depression, as can inflammation and pain, etc. Steroids and other medications can cause depression. He should be drinking astronaut drinks - Boost, Ensure, Fortisip, Fresubin, etc. (depending where your live).

Ideally, he should keep a patient diary and refer to the following:

Keep a patient food/mood/symptoms/medication diary.
http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

CDAI
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The comparative pain scale (no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm

He needs to get a handle on his lifestyle and friends and family should be as supportive as possible. For some patients only multiple operations can help them.

I recommend that you read the following reference:

11 Things Not to Say to Someone With Crohn's Disease or Ulcerative Colitis
http://www.health.com/health/gallery/0,,20533275,00.html

I recommend that he reads the following references:

Very good short description of Crohn's.
http://www.crohns.org/congress/submission00/appendix4.htm

What is Crohn's Disease?
http://www.crohns.org/congress/submission01/appiv.htm

Crohn's Disease
http://www.mayoclinic.com/health/crohns-disease/DS00104

Crohn's Complications
http://www.umm.edu/patiented/articles/how_serious_crohns_disease_000103_4.htm
http://www.umm.edu/altmed/articles/crohns-disease-000043.htm

Comic - Everything you never wanted to know about Crohn's disease
http://ventedspleen.com/blog/2007/10/22/24-hour-comic-everything-you-never-wanted-to-know-about-crohns-disease/

Learn how to communicate with your doctors
http://ibdcrohns.about.com/od/diagnostictesting/a/15minutes.htm

http://www.dailymail.co.uk/health/article-1395028/How-medicine-draining-vital-nutrients-body.html

http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

Drug side-effects
www.drugs.com www.rxlist.com

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