Hello, and mabey you all can give me some advice

[Madoka]

How do you all deal with the constant pain? i ended up loseing my job because of crohn's , constant flares, constant pain, constant fatigue, and
dealing with insomina

my GI had me taking imuran, then put me on himura
the imuran made me VERY sick, and while the himura helped, its side effects
were more than i could handle, constant sinus infections, 3 times my GP doc had to put me on Levaquin to beat the infection down, and she has me on cipro every winter,

i also take colazal 750mg, 9 pills a day

but i want to know, how do you deal with the pain? my gp doc has me taking norco 10-325s right now, but she swiches me between that, and percocet 10-325s every 4 months, i HATE taking the painkillers, but they are the only way i get any relief from the pain

my GI doc even sent me to the cleveland clinic for a consult, but all they told me, was yes, i had crohns, and there wasnt much they could do for me

i am just so frustrated, cant work, waiting on SSD

how do you all deal with it? and why cant i seem to get my crohn's into remission?

Scott

 

[Angrybird]

Hello Scott and welcome to the forum, I am sorry that you are still struggling to feel well :hug:

When you do take the painkillers does the pain just lessen rather than disappear completely? When was the last time any investigations were done to check how things were inside? When you were diagnosed can you recall if you were told what area's are affected?

I don't personally feel that it is acceptable that the docs are just saying this is something you now have to deal with as you have crohns. If the current meds are not working then there are others that can be tried and perhaps it may be worth looking into the diet side of things as well. Some here have found success with such things like enteral nutrition as this can really help with calming things down. Do check out our diet and sups forum to get further info in this area: http://www.crohnsforum.com/forumdisplay.php?f=17.

One other thing that springs to mind is have you ever had your vitamin levels checked? If you have when was this and where you told the specific levels? If not I would get onto you doc about this. It is common for us crohnies to have issues with malabsorbtion and for example many here are deficient in vitamin B12 and this can lead to fatigue among others things, over the counter vitamins will not combat this properly so do ask your doc to get these tested for you.

Will leave it there for now hun.

AB
xx

 

[Madoka]

my last colonscopy was in cleveland last year, my crohns is at the small area where the colon connects to the small intestions, i found out i had crohn's about 4 years ago, and tbh, its been very ruff for me, nothing seems to work

as for the pain meds, my doc allows me to take 4 norco a day, or 3 percocet if i am on them, when i lost my job, i lost my medical insurance with hurt, i cant afford treatment like i need to have

i was seeing a pain mangment speicalest doctor, but had to just go back to my GP when the insurance ran out, and i only take enough to reduce the pain, it never goes away completly, i am not allowed to take that much at once

the pain magment speicalist had me on nucynta 75mg, 3 a day, and he would also cycle me through diffrent pain meds, to help with dependancy issues

my gp has checked me for low iron in my blood, because i cant stay warm in the winter, changes in temp hit me very hard

that and i had a bone density test done, i have eairly stage osteoporosis in my left hip
that and joint damage in my knees, and shoulders, before i found out what i had, i hadnt ever heard of this disease, i hate it
i feel sometimes that this disease will end up killing me one day because
i cant seem to get it undercontrol

as for food, i stay away from food that hurts when i eat it, raw uncooked veggies are a no no for me, spicy food as well

soft and bland for the most part

both myself and my gf wonder if where we both worked might have something to do with
my crohns, we worked in an injection molding building, working with various plastics, because there were like 4 other people who worked there who had crohn's
2 have been able to keep thier disease kinda undercontrol, and the other one lost his job about the same way i did, ran out of FMLA time

oh, yeah i have had 4 colonsocopys done, and i must say, they are AGONY for me, even with the large ammounts of painkillers the doc gives me, it hurts me badly, i will say this about the cleveland clinic, they put me under general
so i didnt rember the pain, thank god for small favors

Scott

 

[David]

Hi Scott and welcome to the community I'm so sorry you're having so much pain right now, that's terrible and isn't something you should have to deal with You deserve to feel well.

My advice is to hit this disease from all angles. Get it and the extraintestinal manifestations under control and I bet your pain will get better. Maybe not completely gone, but at least manageable. My advice on how to hit it from all angles:

- Western Medicine - Continue with the meds your doctor has you on.
- Dietary changes - Research then discuss going on Enteral/elemental nutrition with your doctor. It's a FANTASTIC treatment option. As you're on that, research the [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki] and as it's time to go off the enteral/elemental diet, slowly transition to one of those.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Research it. If you're interested in it, get on it! Medical marijuana has been shown to help a lot as well, unfortunately, I don't think Ohio is a MMJ state.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - This is a big one, especially considering the symptoms you are having. People with Crohn's Disease are commonly deficient in a variety of vitamins and minerals. Request (pretty much demand) that your doctor test your vitamin B12, vitamin D, folate, iron, calcium, and magnesium levels. Those are biggies. If they're willing to test others, all the better. Get the actual levels from your doctor and share them with us. We can provide additional insight from there. But get those actual levels, it's important!
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.

Let's start there. I'm happy to elaborate on anything you want. Yes, this is going to be some work, but I suspect that it will help. A lot.

We're here for you! You DESERVE to feel better.