Crohns

[slim]

crohns

Hey everyone, my name is chris and i was diagnosed with crohns in june 2006...the summer b4 my senior yr. For the 1st week my doc and parents thought i had a little stomach virus and it would go away no problem... well during this week i started to lose weight, nausea, diarrehia, vomitting, no appetite, very weak, blood in my stool, fevers, etc.. I hated this cause i was an athlete and couldn't afford to lose alot of weight and needed to be practicing with the team...not trying to stay alive.. the only thing i could do was drink gatorade.. like 2oz. maybe w/o getting sick. 2weeks later when i lost 35lbs and basically looked like death, my parents drove me to the emergency room and told the doc i need a colonoscopy, after the colonoscopy the doc said i have crohns...but nobody in my entire family has this disease nore down the line, pretty weird. He also said that if i had not come in i would've passed away soon and that the electrolytes in the gatorade SAVED MY LIFE.. I finished high school and still played my sports...tried...i had to gain alot of my weight back...costing me my starting position in football. After high school i went to college for 2 semesters... didn't get a chance to finish due to a major flare up...in the fall of 2008 i lost weight again and had to get another colonoscopy, and ended up dropping outta college duh to missed days and the pain...my body just needed time to recover...which takes some time lol after a flare up. I'm 22yrs old now and i still have a great head on my shoulders, "we all wish for things to be in our life, but by the end of the day we have to live with what we have". To this day i'm still in alot of pain. scale 1-10... 8 everyday...on a good day maybe a 6...but i don't let this get ahold of me, i'm gonna live life to the fullest.

Entocort:3mg
Prednizone:10mg
Promethazine:25mg
Budnesonide:3mg (generic for entocort)

 

[Angrybird]

Hi again Are you in contact with your GI/IBD nurse at all about the fact you are still having this much pain? How are they 'monitoring things'? Do you have an appt booked for the near future with regards to discussing a long term treatment plan - going by your med list cannot see what here should really be a long term thing? I note there is nothing mentioned about a calcium supplement...are you on one? If not get straight onto the doc abot this, it is something that you really should be on when taking meds like the pred as this helps protects your bones. Also have they checked all your other vitamin levels? If no again these should be checked as well, us crohnies have issues with malabsorbtion and it is common for us to be deficient, esepecially in B12. Lastly what would you say your diet is currently like, are you restricting what you eat or just eating anything and everything? I am pleased that your are keeping a postitive attitude on things, this will definetly help, the theory being that if you are feeling well mentally then eventually physically you will as well (feeling very optimistic this evening).

 

[slim]

i dont have those kind of docs...i live in ky.. i'm still alittle new i guess with this disease, last time they did bloodwork was in june of 2011 when i had my recent flare up...they said the only thing was wrong was low potassium, more white blood cells...as usual. i dont drink alcohol anymore cause my own family doc told me it hurts the ulcers...i dont smoke cigs as much...maybe 1 cig every 2-maybe 5days. the diet thing...personally i've been told way too many things of what foods to eat and what not... the docs really don't know what i should eat and what i shouldn't...its a never ending process with them. 1 doc tells me not to eat certain foods...the other tells me the opposite. i set up an opp back home on the 13th and thats quickest they can get me in... if u could...could u sort of tell me stuff i need to know like the vitamin thing?

 

[Angrybird]

Okey dokey. Vitamins: Due the fact that our bowel is in uproar and basically sucks most of time it has an issue with absorbing what it should from our food. It is very common for us to be deficient in B12 - this helps the body absorb iron so the most common side effect is fatigue if deficient, it can also have an affect on your mood. Vitamin D helps control the amount of calcium and phosphate that in our bodies so this has an affect on our bones. Folate helps produce and maintain new cells 'Adults and children need folate in order to make normal red blood cells and prevent anaemia. In addition, folate is important for the metabolism of homocysteine, and it helps to maintain normal levels of this amino acid in the body.' As you can see it is very important that these are checked. When you see the doc you need to be quite firm about getting a working treatment sorted. You are on two different steroids yet on a good day your pain level is 6, personally I don't think this is acceptable and you should be on something that is actualy going to treat the disease and not just target the infammation. Your best bet is to have a look at our treatment forum as there are many different meds and a lot of info about each one so you will need to take your time to look through this. I hope this helps!

 

[xJillx]

Hi slim and welcome! I am glad you have such a positive attitude, but I am sorry to hear you deal with so much daily pain. How long have you been on pred and entocort? These drugs should address the inflammation, but if you haven't seen an improvement, you should reach out to your doctor. Perhaps some adjustment needs to be made to your current treatment plan.

I sure hope things turn around for you soon, and you start to feel better!

 

[slim]

wow...after all these yrs my docs never told me that b4...thank u sooooo much for that information....i got a docs opp on the 13th so i will def let them have it hahaaha

 

[slim]

hey jill, i've been on prednizone maybe for a couple of months from my last flare up... and i use to be on remicade in 2006-07 but i was young and still in high school and didn't wanna lose my hair. but i have to do a stool sample and get back on remicade treatments on the 13th soo yea...fun haha

 

[Angrybird]

Fingers crossed the Remi gets things sorted for you this this time round, it has been the miracle drug for many here. Keep us updated on how things go.

 

[slim07]

it's slim

hey guys i'm better...had to change my name to slim07 cause i forgot my password and had a diff internet thing... but i ended up having a bad infection in my small intestines and my illieum was swollen and my colon was swollen... thats y i had soo much pain and that made my flare up worse. but i'm good now. was in the hospital for 5days and now they got me on antibiotics and remicade and stuff. i'll keep u all informed

 

[Angrybird]

Hello there, it's good to hear from you! I am sorry you have been so poorly hun, I am glad you are starting to feel better though Definetly let us know on how you are getting on.

 

[David]

Welcome back Slim If you want your accounts merged so you can be "Slim" again, please PM me.

 

[slim07]

it's ok.. i ended up losing 31lbs in a month too. I actually have a good question to ask... One of the docs gave me half of a remicade treatment when i was in the hospital...and wanted me to do the other half when my body was able to do it...so when i finally got outta the hospital, a diff doc said i couldn't get the other half cause it would be too dangerous to do....so then they wanted to wait till april30th to do a full remicade treatment...and they are now saying that i didn't even get a half treatment that i didn't get it at all...but i have my hospitals paperwork...and it has half of remicade showing on there........so would it be ok to have a full treatment now on april16th?? or will it affect me