I need some truthful help

[ontariomom]

Because my appts with my GI are few and far inbetween and my own NP and GP dont want to do anything for me i want some honest answers.


First: I am tired. SO tired. I sleep decent at night i seem to get on average 5-7 hrs a night. Which is normal for me. But during the day, after being up for afew hours i feel like i could sleep again........whats up with that????

I am normally energetic and like to do things, and workout and now i feel like i all i want to do is rest.

I think that if i lose weight i will feel better. Right now i dont feel good about myself. And i know that my eating habits arent great. But in all honestly, i am scared to change them. Right now, with how i eat, my D is mostly under control. I havent had any bad days or moments in over a week. And then it was just one. I spent 20 min int he bathroom at the grocery store. BUT that is the first time i have done that in months. So i am really afraid. If i start to eat more healthy and add back in fruit and veggies, what i am going to do to myself?????? I cant decide which is better to eat carbs and starches etc and feel decent. OR to eat healthy, eat the foods i really want, and risk screwing up my tummy and bowels?????? I dont know what to do!!!

I am assuming that i need to get into taking my multivitamin again and perhaps that will help. But i just dont remmber. I know, its sad. I started back on birth control this month, first time in 20 yrs!!! to try and gain some control over my periods, and have a hard time remembering to take them on time!!!!

OH and then there is sex I have no desire. None. couldnt care less. WTH?????? We used to have a active sex life, like 4 times a week active. Up until about 3 months ago or so, which was just a busy time for us. And now i couldnt care less.

I need some truths about CD . Is this normal?? Should i be this tired and devoid of motivation and energy? Is the lack of libido normal? What about food? Do i just try each day different things and see what hurts? I hate that thought......


right now i am all stuffed up, and at the moment cant tell if its the starting of a cold or just from doing some renos around the house. But i am leaning towards cold since my kids had it last week. Maybe that is wearing me down too???? Is that normal? are colds going to kick my ass like this?????

ugh

 

[Terriernut]

I think there are very few of us here who dont know where you are coming from!

What medication are you on for your Crohn's right now if I may ask? And if your Dr and GI arent doing much for you, can you try and get a second opinion?

I think it would be very beneficial for you to have all your vitamin and mineral levels checked. Iron, B12, Vitamin D etc. This will pull you down very quickly. Us crohnies dont absorb vitamins like normal people, and you may need some help with that.

Meanwhile, if your body is telling you to sleep more...listen to it.
:hug:

 

[ontariomom]

No meds for my CD my GI wont offically say anything until he sees me next. He has said it is Crohns but told me that isnt an official dianogsis.....frustrating. I have had 3 dr tell me its CD but no one will officially say it til they finish with the testing.......i have had mri, stool, colonoscopy, small bowel......all say yes. I get annoyed when they say that. i just want someone to say YES this is what you have lets treat you!

He has plans for remicade or humira to close up my fistulas.

Oh and i also want to get back to work. I am looking for a job and need to make some money.....sick of being broke all the time. But then i wonder HOW can i work when i can barely manage the house and kids??????

 

[D Bergy]

One thing you can do is have your vitamin B-12 checked. If it is too low it can make you tired. It is common with any intestinal disease. Might as well have your D level checked also.

Since you are a female Low Iron can drag you down.

Dan

 

[ontariomom]

my iron stores were low, but everything else was fine. That was a couple months ago. How often should it all be checked?

They werent concerned about my iron and didnt feel like i needed any xtra. Just said to try and eat some iron rich foods to help.

 

[Johnnysmom]

My son has crohn's but I have another auto immune disorder so I am familiar with the exhaustion. The only way I could describe it was that I would wake up feeling tired. And it was the sort of tired feeling that I could feel in my legs as I walked up the stairs. I would have to lay down mid day in order to function. I really think this has something to do with the inflammation levels in the blood. Mine got better after a few months and I found it helped to get some exercise in the morning. I also rested when my body needed it and took some Vit d, Vit b12 and a multi Vit which really helped. I buy the gell cap vitamins because they are easier to digest. Or you can get chewable or liquid.

About healthy eating, fruits and veggies are the hardest for your body to digest. If you are getting D like 20 mins after you eat them you are probably not getting lots of nutrients anyways. I switched my son to a fruit/veggie smoothie with protein. Easier to digest and will help you absorb without upsetting your stomach.

My son is on an immune suppressant which I thought would cause more colds etc but it hasn't he is actually much healthier than before diagnosis. When he was undiagnosed but had inflammation he caught everything. His body was just not absorbing enough nutrients and was so run down.

I would give yourself some time to heal and get on some meds if your Dr. can give you a definitive diagnosis. The vitamins should help until then. I hope you are feeling better soon and let us know how you get along.

(((((hugs)))))))
Tiffany

 

[StaceyQ]

I know exactly how u feel, ur situation that you have described is how I feel apart from I work full time.
My cd has been up and down since I was diagnosed in 2009.

Curious bout the vitamins as noone has ever told me this. I know I am anaemic but am allergic to iron tablets and infusion do just have to eat iron rich foods.

You are not alone on this x

 

[Securitydude1979]

If you're truly looking to change your diet, I'd recommend starting by increasing your fiber intake. SLOWLY. Too much too fast can cause more GI issues. But increasing fiber can also help regulate your system, so as you add in fruits & vegetables they might not upset things too much.

You might not be on any medications for the Crohn's, but what about to treat the symptoms? Can you use OTC anti-diarrheal meds like loperamide (Immodium) to make things more tolerable?

As for the fatigue, that's not uncommon. In my personal experience though, almost every flare has been a little different. Sometimes it's more D, others just more stomach pain. Fatigue wasn't an issue every time, but when it was, it was killer. I could hardly sit down without nodding off. It made me feel terrible (emotionally) & I was really hard on myself, because my unintentional napping led to me neglecting my kids & late dinners & what not. It was awful. It may not be the healthiest thing, & I don't necessarily recommend it for everyone, but I personally started supplementing with caffeine tablets to combat the fatigue. I'm not saying its a good one, but it's an option.

And finally, it's my personal belief that everyone who suffers from Crohn's should take a multi-vitamin. Well, even healthy people can & do benefit from them, but for us, with our potential nutrient absorption issues, it's a good idea. Add to that the times when our diet isn't great, or when you're following something like the BRAT diet, and it's doubly important. You're obviously not meeting you're RDA of vitamins & minerals when you're restricted to such a small list of foods.

I'd like to state here for the record, that I'm not a medical practitioner & nothing here should be construed as medical advice. Just some basic beliefs & opinions based on my own experience that I thought might be beneficial or helpful. Just a little disclaimer to avoid any potential confusion.

Best of luck!

 

[Beach bum]

I am sorry to hear you are having such a hard time.
First thing I have to say is everybody is different.
But yes in general, your symptoms and problems sound "normal" for IBD

When I was first ill, I was so tired sometimes I couldn't think straight. I know now that was mostly due to anemia and iron deficiency, since taking iron supplements I feel much better. I also think vit. D spray has helped in this department.
We don’t get much sun in the UK ha !
But for me 5-7 hours would not be enough sleep , I need 8.

I am on low fiber so no fruit or veg for me either. I really think it has helped me feel less full and sick so I am sticking with it for now.
To get round the lack of "good stuff" in my diet, I juice every morning which I find gives me loads of energy - incidentally this can help you loose weight too!

As for sex, well one of my first symptoms was pain during sex. So I seriously went off it, which was frustrating for me and my Husband. But it gets better; we are back to the honey moon faze now that my inflammation has gone down.
And yours can and will go down, with the right treatments and supplements, but you should try to get into the habit of taking vitamins and things if you want your life back.
Maybe a phone app could help remind you.

Some links :
http://www.juicemaster.com/

http://www.hollandandbarrett.com/pages/product_detail.asp?pid=2565&prodid=2843&cid=163

 

[wild_one353]

unfortunatly for crohns, yes thats very normal.

i do a similar thing to control diarhea, for energy b12 and iron are probably the first to address. too much iron can be bad for inflammatory diseases, so watch your doses, find a sublingual b12 lozenge that is absorbed under the tongue, that should take care of some of the energy issues.

iron may be better obtained from meat then supplements, clams and oysters have high amounts of iron, you can eat a few day to day as a supplement.

if you are avoiding veggies, you need a carotenoid supplement, a good one i found is by jarrow called carotenall, i believe its the best on the market. although you should occasionally eat some veggies.

the majority of my diet consist of 700 calories from whole wheat which i make from scratch to avoid added sugar, 300 calories from oats,250 calories from one cup of refried beans 100 calories whole green olives for some fat, walnuts and canola oil for fat, and a small bit of cheese 150 cal for more protein and calcium, but the rest of my calcium comes from calcium supplements a brand called posture d which is calcium phosphate the form that is in milk, calcium citrate or carbonate makes me feel weird where the natural form feels great. so this diet is very high in fiber, there have been studies that show crohns patients that consume the most fiber tend to spend the least amount of time in the hospital.

for veggies i have good luck with broccoli and cauliflower 150 calories, i cook a whole potful of and it seems to not negatively affect my disease. i buy and cook an entire bag of frozen broc/cauli.

i largely avoid corn, rice or barley, due to causing symptoms of constipation, but i plan on working them back in at a later point because rice is seriously good for our disease, its super high in tocotrienols a form of vitamin a, antioxidants and melatonin and brings alot of my energy and sex drive back, but its hard to digest. im still perfecting my regimen to this day and finding ways to solve all my problems and hope to one day post all the problems and how i solved all of them on this site or write a book one day, on how to manage crohns 100% without drugs or surgery. doing it this way though has taken a massive amount of time , but i was unable to work anyway, what else could i do??

this is a regimen i have perfected over 3.5 years since being diagnosed i have never had surgery nor have had many complications since being diagnosed. i have major energy issues as well, but i avoid meat which is a source of iron, so that is one major reason i still have the energy issues. i have tried pentasa which seemed to do nothing, then lialda which made me feel worse, but did help my inflammation, so im not sure im convinced that medications are the best option for me,so far i have found i feel better without my medication with the diet that i follow.

hope this helps.