Suggestions please

[Chelle78]

Hello people!

I am looking to network in here to get some new info. My doc says I have crohns and keeps adding to my meds to the point that I think I am reacting to the meds quite severely.

My doc keep saying "that's just part of the disease" and adds to my meds,
and adds to my diagnoses and the cycle continues.

I keep saying I am reacting to the meds. the doc disagrees.

I am looking for other options since I am just starting out in this mess of chaos. I have too much to live for besides just fighting this stupid disease and having to explain it to my family and lack of friends (because people just don't have enough time to work around your inability to plan around your illness) or they think that because you don't mention it for long enough you must be feeling well now and you are just lazy.

Hoping for some natural therapies/options to try one at a time.

I have been on ALOE VERA JUICE for about a month to combat the chronic constipation and bloating and pain the meds have been throwing me into. So far----LOVING IT. It is a variable amount.

Starting to add coconut milk tonight.

Anybody else get sensitivity to meds that look like just more conditions?


MEDS list:
APRISO, started omeprazole-added aloe vera juice
stopped amitiza, promethazine, zolpidem
On topamax, armour thyroid

Thanks guys!

 

[ameslouise]

Hi Chelle and welcome!

You will find lots of info here about all the CD meds. Why don't you list for us what you are currently on, and what kind of symptoms you are dealing with (besides the constipation) and we can do our best to heap upon you more advice than you can handle!!!

- Amy

 

[Crohn's 35]

:welcome: to the forum! Yes, I have reacted terribly to Remicade, methotrexate and 6mp. My doctor believes my body just doesnt like meds and he knows I know how to keep my crohns in check. I have had this disease for 20 years plus symptoms since I was a teen.

What kind of meds have you reacted to and how? Hopefully someone can share their experiences too. Outsiders dont understand because they dont have the disease, pray they don't, because isnt nice. Glad you are here.:smile:

 

[Chelle78]

Wow! responses so quickly! I'm on mountain standard time and late to make dinner, I will be back tomorrow with more info and hoping for great responses.

Thanks Guys!
Its hard to type with a 2 year old on my lap.

 

[xJillx]

Welcome, Chelle! It really stinks that many of our treatment options actually make us feel worse than better, and I am sorry you had to experience this. Many people on the forum have had luck with a natural route. Do some searching around the forum, and I am sure you'll come across a lot of helpful information.

I hope you find something that works for you soon, so you can start feeling better!

 

[ChampsMom]

Hi Chelle,

Welcome aboard... I am excited to hear about alternate methods also - coconut milk? Are other people drinking coconut milk? I'm looking to add aloe to my son's diet - someone told me to put it in his smoothie. I also just purchased the magic bullet for him so he could make anything he wanted in a more liquified form, plus smoothies, etc. He's more likely to be constipated than diarreah, though it happens too...

 

[Chelle78]

APRISO anyone?

What kind of side effects do people get to it?
I've been on Apriso, Amitiza, and then had to add promethazine for the nauzea. But then When I could finally start eating again after the diarhea would stop, I would go into constipation. Then I would be too nauseated to eat.
Why eat if you are just going to throw it up again right? I got to the point of not eating because it was either gonna go right back up...or straight through. I used to love food. But when I'm in that cycle, I just smell food and go to my room and cry. My doc is not concerned that I look like a starved Ethiopian at 93-95lbs (I have friends that feel like fat Americans at 105 from Ethiopia). My joints ache. I can't lift my 2 year old without pain. When I do fill up my plate because I am hungry, I can't get it all in because there is not enough room in my gut for it.

So my doc had me on so many meds that I was sedated. Really? Just put me in a mental hospital so I can't see the family I am watching in my house everyday and fighting with because I can't communicate with them right?

My gerd was completely healed before the diagnosis of this stuff, but now it is back with a vengence because of the meds. The doc says it is the disease. Sure.

If the aloe vera juice keeps working longterm than i will be able to keep eating better and hopefully gain some weight.

The MUSCLE MILK weight gainer powder seems to help keep me stable when I can't eat solids either. I don't want to just complain. But I do want to get better. I just don't want to wait anymore.:sign0085:

 

[Miss Underestimated]

I was wondering about the sedatives. I use coconut milk. It is digested more easily than other foods, and provides nearly instant energy. I don't know if it's helping my CD but it doesn't seem to be hurting me.

I have changed my meds a couple of times, myself - stopped one completely, and changed doses on others. My doctor seems to respect those decisions. If he didn't, I would have to find another doctor, I think.

 

[Chelle78]

Instant energy? I could use that! It will be worth the try anyway.
Thanks for responding.

 

[bruscar]

Welcom Chelle,

I was on a shedload of meds for just over a year before i went under the knife, which i was actually happy about.

Since my first surgery i cannot eat bananas, but do get a great lift ( energy wise ) from them so i make banana cake. Works a treat.

Also for about two years i ate eggs, every which way but raw . Let me tell ya i still do.

Good luck and good health to you.

Bruscar

 

[Junot]

"I am looking for other options since I am just starting out in this mess of chaos. I have too much to live for besides just fighting this stupid disease and having to explain it to my family and lack of friends (because people just don't have enough time to work around your inability to plan around your illness) or they think that because you don't mention it for long enough you must be feeling well now and you are just lazy."
this is my life hahaha I like how you said it

when its real bad and I cant eat I have protein shakes since I use up so much energy at soccer it usually makes everything worse but the shakes dont seem to hurt to much. other than that the only medicine I have when the pain is awweeeful is weed, music and closing my eyes and thinking of something I love doing like playing soccer. I'll constantly run through plays and feet movements for hours while listenin to music anything to get my mind off it and to stop the shakin n sweatin.