HealingWell
Search Close Search
☰

On Vacation, but my body still feels overworked

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/30/2008 4:44 AM (GMT 0)
I am at the tail end of my one paid week off per year and it is my first week off since being diagnosed with Crohn's.  I know I should be feeling pretty rested up by now, but I don't.  I didn't go on vacation.  I just hung out at the house and took the children for school supplies.  I completed a few cleaning projects out of sheer boredum.  Other than that I have spent my time reading and watching movies.  It's been nice, but my body still feels worn out!!!!  I'm a preschool teacher and I always attributed my fatigue to chasing the kids around and my pain and neasea to stress.  However, I feel just as fatigued and have had every bit as much neasea and pain as I do on a work week.  I"m also figuring out that mornings (after I've had my 1-4 BMs) are my good times and anytime after 4pm is not a good time to start a project.  I definately have most of my back and leg pain in the afternoon.  So, I guess I just need to get used to the fact that this is probably as good as it is going to get for me and be thankful that I only have mild Crohn's and am actually able to work.  Have any of the rest of you noticed that a vacation just doesn't feel like a vacation anymore?

 

Posted 8/30/2008 5:12 AM (GMT 0)
You can feel better. As I told someone else, if you can go into remission with a parenteral diet, there must be something that you are eating that causes you trouble. I know that it is near impossible to take care of kids, work and do a strict diet, but you need to try it. It will be tough since you will have to eat different food from the rest of your family, but if you can feel better, it will be worth it. The pain and fatigue mean that you have active inflammation. You can try bee propolis caps to help that, or another option is turmeric capsules. Going by the experience of others here, propolis is worth a shot - it is harmless at worst.
Posted 8/30/2008 4:43 PM (GMT 0)
Have you had any blood work done lately? I am anemic right now, and fatigue is really a problem for me too. Just a thought!
Posted 8/30/2008 5:19 PM (GMT 0)

Keeper said...
You can feel better. As I told someone else, if you can go into remission with a parenteral diet, there must be something that you are eating that causes you trouble. I know that it is near impossible to take care of kids, work and do a strict diet, but you need to try it. It will be tough since you will have to eat different food from the rest of your family, but if you can feel better, it will be worth it. The pain and fatigue mean that you have active inflammation. You can try bee propolis caps to help that, or another option is turmeric capsules. Going by the experience of others here, propolis is worth a shot - it is harmless at worst.

What about the people who have been on TPN for months or years and don't eat/drink a single thing and their crohn's still flares?

There is more to crohn's than just diet. Diet helps, but doesn't always put into remission.

Posted 8/30/2008 6:28 PM (GMT 0)
TPN for extended time results in loss of the mucous membrane and then there is nothing between the gut bacteria and the immune system. I'm sorry - I realize that there are many different experiences, but if TPN can put someone into remission, then it seems hard to argue that something in the diet that is not just the pre-digested stuff in TPN formula that is causing the problem. It may be that certain foods are irritating due to food lectins, or individual allergies, or they may support harmful bacteria growth. It may be that altering the diet can alter the bacteria in the gut and maybe eliminate the bacteria that are triggering the immune system. The upshot of this is that it has helped some people. It is also possible that it may fail because a person can develop new allergies to foods or they may not clear the bacteria that are triggering the problem or they may develop new immune reactions to other bacteria. But, nothing ventured, nothing gained. If inflammation can be eliminated, then the problem can be controlled by keeping the mucous membrane healthy. That keeps the bacteria out of contact with the immune system. Keeping the mucous membrane healthy means avoiding known triggers that cause increased permeability - Gut infection, NSAIDS, stress, alcohol and I forget a couple of others. It also means supporting the mucosa with probiotics and vitamins and possibly it may require that other anti-inflammatory aids be used. Pentasa is basically just an anti-inflammatory - so is prednisone. They work fine for some, but not for everyone. Propolis and turmeric are also anti-inflammatories. They can supplement the regular meds or maybe replace them - it depends on the individual.
Posted 8/31/2008 1:41 AM (GMT 0)
Keeper, I don't understand your response about TPN patients who still flare despite not eating...? TPN doesn't go in the digestive system, it goes in a major vein and feeds the heart directly.

I haven't used bee propolis myself because I'm allergic to pollen. But I've heard it does help.

I presently use diet (mainly the maker's diet and I'm thinking about trying gluten free too), probiotics, digestive enzymes, prednisone, pentasa.
After my pregnancy, I'll start camomile tea again, and probably imuran too. I've also been looking into hookworms.

Momikins, I know how you feel about the fatigue. I have days when I'm sooo tired no matter how much extra napping/resting I do.

Maybe you should get your b12 and ferritin levels checked.

Posted 8/31/2008 2:17 AM (GMT 0)
I actually find I do better working then staying home. At work I have a routine ie; wake up at the same time, all my meals are around the same time. I sometimes don't look forward to the weekends do to the lack of routine, so now I try to keep to my weekday routine on the weekends.

I know this does not sound great since you are tired, but I find I have more energy when I exercise even if it is walking for 30 minutes. I walk the dog every day just around the block, so I can stay close to the bathroom.
Posted 8/31/2008 3:24 AM (GMT 0)
TPN, when used exclusively for extended periods of time results in the atrophy of the mucous membrane lining the gut. The immune cells in the gut are reduced in number and this reduces the immune competence of the gut. See: http://lib.bioinfo.pl/pmid:9230811
Current ideas about dealing with the problem include supplementing this with enteral (into the gut) feeding and including glutamine in the enteral feed. This preserves the gut immune cells without requiring digestion. A lot depends on the circumstances in the gut prior to TPN as to how successful it will be. Sorry to be so technical - it's just how I deal with this stuff.
Posted 8/31/2008 3:46 AM (GMT 0)
in regard to feeling unwell on vacation--I hear you. Even after all these years with crohns I still have this incorrect paradigm that b/c i'm not working I'll feel tons better. There I was in the Berkshires in this great inn, up for hours pooping my brains out and so darn exhausted. My husband was up for romance and I was up for blankets and tea--which is lovely in a beautiful inn but oh so disappointing. And just last week we were at the beach with my husband's family and I realized I was exhausted b/c I was playing bartender for everyone and helping with the dishes and garbage--I was "away from it all" but far from relaxing. It might have been better for me to stay on the couch. Today my husband took off for 2 days and I had all these things I was going to do--some for me and some for the house--but I slept and here I am with a heating pad on my tummy and a cup of tea. What I'd really like is a plate of nachoes and a few glasses of red wine. Before this flare, that's what I'd do for dinner when he went away--or order a lot of Indian food b/c he doesn't like it. So annoyed with myself and had a little pity party.

I just keep thinking that b/c this was my "time off" my disease should calm down. While rest really does help, it has to be complete,do nothing, rest for me. I'm bored with that.
Posted 8/31/2008 1:05 PM (GMT 0)
At least it should make us feel better about working. Some people stop working because it makes their IBD worse. If we know we feel the same at home or at work we might as well get paid for it, right!!
Posted 9/1/2008 5:43 AM (GMT 0)

Thanks for all of your replies.  Sorry I didn't get back to you until now, but I took a flexerile this morning because I was having a lot of real bad pain in my lower back and it knocked me out.  I ended up sleeping until 5pm! 

Keeper, I am definately considering doing something different with my diet.  I'm currently in the process of waiting for some food allergy rast tests to come back, but so far no food allergies have been noted.  I think I'll try to go off of dairy first as my friend with fibermyalgia has done that and has really seen the benefits of it.  I tried for a short time and then returned to milk.  It's hard not to drink milk myself when I'm encouraging the children to drink milk for their bone health.  I will just have to try agian and this time explain to the children somehow why I"m not having milk.  I was tested for Celiac disease and was not shown to have it nor did I show any sensitivities to wheat on a RAST blood test, so I hesistate to give wheat up...I love it so!

Currently, I'm on 500mg Amoxicillin 3x a day for 10 days to deal with Sinus congestion.  The antibiotic is definately messing with me!  I'm supplementing with acidophilus.

I've tried fish oil and really haven't seen a benefit.

I really haven't seen a clear connection to what I've eaten and my symptoms.  There have definately been a few times when I was sure that what I ate caused me pain, but then at a later time I've gotten brave and had the offending food agian with no adverse effects.

So, I will return to work on Tuesday and be thankful for a distraction to the pain.  I really don't want to try any other medicine options other than the Pentasa.  I think I should save the big stuff for times when I'm running a fever and vomiting.  Luckily, I haven't had to use Prednisone yet.

Thanks everyone for your replies. 

Posted 9/1/2008 5:47 AM (GMT 0)
Nanners,
I have had blood work done within the last six months and I have no sign of anemia or B12 deficiency. (Although, in previous years I have dealt with anemia.) Overall, the doc is pretty impressed with my blood work but states that I definately have Crohns. He said that despite the inflamation in my colon in small intestine, my intestinal tract is still doing a good job of taking in vitamins and nutrients from food.
✚ New Topic ✚ Reply