Hi

[krbsmom]

I am new here, My name is Sharon I am 47 and was dxed with crohns this past Aug when i woke one morning with pain so intense i could barely straighten myself up to walk. After a four day stay in a local suburban hosp I was released, came home still had green stuff coming and going. next morning i went to Emory in Atlanta, was in there er most of the day, but they kept me and did the resection on me, it was an emergency resection that had started as an exploratory . the small bowel had folded over on it self with may aheasions. Was in surgery for 12 hours, it scared my husband to death esp when he got a call in the middle of it saying they think they see a mass. Thankfully there was no mass! But had my ileum resected. Then came the recovery, for the most part i was not aware in the recover, they had me on a pain pump and my mind was so scattered. I also had an wound infection so i have a huge scar now and a belly shaped like a heart. At least the infection improved and i was released from hosp. Then i came home and everything was making me nauseated , even the smell of toast toasting turned my stomach so bad , even with zofran it wasn't doing much good, two wks later i was back in the hosp with nutritional problems cause i was having so many problems trying to eat, come to find out it was a potassium problem. My potassium had gotten too low, it was at 1.7. So they started IVs for nutrition and potassium. They pushed my potassium up so quick I lost the use of my thumbs for a day. I finally got my protiens up were they would allow me to go home. then i was back at ER two more times once for dehydration and once for infusion of potassium. Its the hardest thing I have ever come back from in my life. I felt like I lost 6 mths out of my life, cause i literally could not do anything , go anywhere, for six mths. and for most of that time i was totally out of it with dulided or morphine
so I just had an MRI and a colonoscopy done as follow up, and the crohns is still active and i have a fistula thats allowing gas to enter places it shouldn't. I am already tired of this disease and its multitude of complications it has shown me. I am a person that doesn't like doctors, hosp, meds etc and I have decided i do not like this disease. So Im going to get it under my control if i can't rid myself of it and ive got to do this soon or we are going to have words with each other....me and crohns....I went in at 146 i came out anorexic looking at 109...I haven't been 109 since fifth grade!! So I have started a multi vit (with no iodine and gluten free), I have omega 3-6-9 oil 2x day, calcium +D, B stress complex, take galviscon for gas (as it has magnisum in it) Zofran to help me with nausea (which i still have lots of) I take atentlol for arrhythmia for my heart. I also have gone to a gluten free diet (which i love btw its easy to do and has made a huge difference) I avg one red meat a wk, and thats for the iron for anemia which ive had problems with in past but am looking for alternative that doesn't contain soy (soy has gluten). Anyone have any other advice to what i should be adding non-medicine to get this monster in my belly under control? Im trying to avoid those meds that i have read so much about , and the nasty side effects they have as long as possible. :sign0085:
Thanks,
Sharon aka krbsmom

 

[CDDad]

Hi Sharon,
Yes, join the Crohn's haters club! It's done a number on me too. I poo through my side now because of it!

My only advice is not to avoid those meds. I think you might create a vicious cycle where things get worse and then you'll need even stronger meds. You've got to keep the inflamation under control.

I'm completely in remisison since my last surgery but still taking Humira to try and keep it that way.

 

[Astra]

Hi Sharon
and welcome

Poor you, all that so quick!
I agree about the avoidance of meds, not a good idea, Crohn's is inflammation and no amount of supplement or diet will get rid of it, you'll probably need a maintenance med, but that's my own opinion. I tried going med free and ended up seriously infected and blocked and near death!
It's trying to find that happy medium, side effects or inflammation? I know what I'd choose.
lotsa luv
Joan xxx

 

[LOSTnut]

Hi Sharon,
well, I think you will be hard pressed to find anybody who is actually having and loving this disease that can hit you without warning out of the blue.
I hear you on the weight and potassium. Usually, my potassium drops out from under me too. So much so that I am usually in the cardiac station in the hospital.
And, don't get me started on the weight loss. I am currently at 105 lbs and don't even remember weighing this less in my life.
The other thing, as a woman, it ain't a pretty sight with ****s like empty gourds and stick legs .... Like we don't have enough body issues ....

Good luck in getting it under control, although I too, hve to agree with CDdad and Joan, that most likely it won't be without some kind of meds.
Hang in there and get better soon.

:voodoo:

 

[PeninsulaLil]

Hi Sharon:

With the severity of your symptoms and the length of time you've been diagnosed, I'm surprised doctors haven't put you on some meds--anti-inflammatory at least. If that's the case, I would definitely ask why; sounds like you were on pain killers/narcotics, but that doesn't help with the inflammation and controlling flares/recurrence. Just my opinion.

Good luck and I hope you feel lots better soon!

Lilly

 

[krbsmom]

I guess I really can't bitch too much or shouldn't at least, it waited this long to show its true ugliness in my life, i guess i should see the flip side of it and be happy i wasn't dxed with this at 7 , 15 , 17 or 22....at least im old...
I seem to be going thru a circle of emotions too with this I guess thats probably normal too.