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New Diagnosis

Hi everyone

I would like to share a bit about me. I was diagnosed with Crohn's a few days ago and i am a little lost. As a child i had a ton of food allergies so i have had diarrhea for as long as i can remember. It has gotten a lot worse over the years to the point that food tends to only stay in me for about 2 hours and comes out undigested on bad days. I was diagnosed with IBS in 2009. I had an endoscopy and colonoscopy on wed that showed stomach erosion, hiatus hernia, ulcers in duodenum bulb, 2nd portion of duodenum and Terminal ileum. About a month ago i had a blood test come up positive for celiac and i am waiting for the biopsy results to know if i have both crohn's and celiac. This is a bit scary I have had other issues in the past that has made it difficult to hold a decent job with benefits. So i currently do not have insurance and cannot afford it. I have been dealing with kidney stones for 15 years, also have had painful ovarian cysts and bilateral kidney cysts. I do have a lot of lower back pain, hip pain and stiffness that comes and goes. Not only do i have D but i have nausea every morning and i have to wait two hours upon waking up to eat. Lately if i am not running to the bathroom i get terrible back pain and end up vomiting. I am not currently taking any meds and i cannot take Imodium for the D it makes it worse. I also have trouble with vertigo on occasion especially if i was on an elevator and problems with my hands and feet falling asleep quickly. my hands also hurt if i hold things like my phone for more than 5 minutes. It is getting more difficult to sit or stand in one place for very long. I am tired of feeling sick and being in pain but i think i am getting answers now. I have been trying to figure out a plan to pay for treatment or get help. I do have a job doing deliveries that is flexible. Will i have a difficult time working on meds? does anyone have similar troubles?
 
Welcome to the forum. Sorry to hear everything you are going through. Have you been tested for vitamin deficiencies? It sounds like that may be part of it. Have you tried a low residue diet to calm your stomach for awhile? I think meds would be needed and would help rather than hinder. Have a look around the forum. It is a great place to talk with people going through similar issues. Hope you can get some relief soon. :rosette1:
 

Angrybird

Moderator
Hello and welcome to the forum.

I am sorry to hear that you are having a tough time of things at the moment :( I am also wondering about your vitamin levels and whether it is at all possible to get these checked? Also have you been advised on diet with regards to cutting out foods in case you do have coeliac disease? With regards to meds there might be some trial and error finding the one that will work for you but one done there shouldn't be any problem with working - with all the meds I have been on I have been able to work full time without issue. One thing to remember is employers are not allowed to desciminate against you because if you have an illness like crohn's or coeliac disease, at least that is how things work over here.

Please keep us updated on how you get on.

AB
xx
 

David

Co-Founder
Staff member
Greetings and welcome.

I agree 100% with the others about vitamin and mineral deficiencies. From what you described, I can just about guarantee that you are deficient in vitamin B12 which is leading to peripheral neuropathy in your hands and magnesium deficiency as well. Get tested for the B12 and get more magnesium in your diet and supplement if your doctor is ok with that.

If you are celiac and have Crohn's, then proper diet and medication will likely not only have you feeling better, but better than you have in a long, long time.

We're here for you.
 
Thank you all for the warm welcomes!
Next visit with the GI i will ask to get checked for vitamin and mineral deficiencies. I know that my CBC has been off many times with low red blood cells and my family doctor never looked into it. The only doctor that talked to me about diet is a urologist and i have done some research on the internet about hidden sources of gluten. Glad there is so much information out there. I do hope to get referred to a dietician if i do have celiac so i can get the most out of the food i eat. I did go a little crazy with the cookies over christmas and that could be why i went a week without digesting anything. I am starting to eliminate some things from my diet that may be causing upsets. I quit drinking soda a month ago and i immediately noticed a difference, Bread is one thing i am having a hard time not eating, the thought of eating pasta makes me nauseous and i don't do cereal because its no fun without milk. Yesterday i wasn't running to the bathroom all day, i had terrible back pain instead. hoping to find a medium to help get through the days before my appointment.
 
Hi mj12,

I was in your same boat a few years ago after my dr. stopped me from working due to my health. It took 3 years to get disability and I had no insurance for those 3 years.

A few tips on help with seeing the dr. See if either you have a free clinic in your area or see if your local hospital offer charity help for paying bills like emergency room visits.

As far as medication goes almost every one of them have a assistance program if you qualify financially. Just go the web site of the medication and look for the link, also you can go Google "Prescription Assistance Programs" there are many out there like rxassist.org.

Hope you find relief soon.
 
As for gluten free foods...there are so many good ones out there now. I do not have celiac disease, but I do have gluten intolerance. Try Udi's breads. They are good. Lucy's makes yummy cookies. Tinkyada Pasta Joy makes the best pasta (when you are ready for pastas). =)
 
Thank you Earnellzwifey! i did get financial assistance from the hospital for the scopes and i will look into the prescription assistance programs. My pathology report came back negative for celiac! glad i do not have to go gluten free. My appointment got moved to Friday now i don't have to wait so long! I really appreciate this forum everyone is so nice and it has been very helpful thank you
 
Welcome to the forum. Sorry to hear everything you are going through. Have you been tested for vitamin deficiencies? It sounds like that may be part of it. Have you tried a low residue diet to calm your stomach for awhile? I think meds would be needed and would help rather than hinder. Have a look around the forum. It is a great place to talk with people going through similar issues. Hope you can get some relief soon. :rosette1:
I was diagnosed with Crohn's November 2012. Doc put me on Asacol and told me to get on a low residue/low fiber diet. I still had stomach aches most days. Then saw dietician December 21 and found out things I was still eating that was probably causing the stomach aches - yogurt with fruit, peach preserves, tomato sauce Once I stopped all of that and followed the low residue diet to a T - within days of that appointment I stopped having pain and haven't had any since then! I am all for low residue diet and wonder why other gastro doctors are not recommending this diet with a diagnosis of crohn's or IBD ?????????? I feel NORMAL again!!! I highly recommend this diet if someone hasn't tried it to see if maybe it will work for them.
 
Very cool that you tested negative for Celiac's disease. You still might want to make sure you don't have issues with wheat and gluten foods though. There are certain triggers/things that just make our stomachs hurt, and it is different for everyone which is why keeping a food journal can really help. Like Sarah50 said,starting with the low residue diet should help too. I don't know why the GI docs don't mention the low residue diet or why they say food has nothing to with it. Food certainly plays a role in how we feel.
 
I am glad that you do not have celiac disease. I was do glad too when my test came back normal. I am glad that you are getting some financial assistance. Pleas keep us updated in how things are going.
Hope ing you find answers soon!!!!
 
Hey all! yeah i don't know why my doctor didn't suggest the low residue diet though i saw him today and he did tell me to avoid fruits and vegetables while i was having stomach issues. He put me on Budesonide until i got to the pharmacy and it was $1150. really kicking myself for not having insurance but when i looked into it was too expensive with my pre existing conditions (ibs and kidney stones). Now i have folic acid and sulfasalazine. It says to take 4 tablets 2 times a day, that seems a bit much to me. Having crohn's seems like its going to be very expensive... Have a happy weekend!
 
Sorry to hear that you were unable to get the medication that you need. have you tried to look up the pharmaceutical company that makes the drug? Most of them offer a program to help cover the cost if you qualify for it. Also Google Medication assistance programs, there are several out there that might be able to help also.

I hope that the ones you are on brings you some relief.
 
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