Dealing with Crohn's in Central America

[fendeesha]

I am an American woman living in Belize with my husband, three children, mother in law and father. I have not been diagnosed with Crohn's by the doctors here, but I have two close family members living with Crohn's and my symptoms make me look like the poster child. I have arthritis in my wrists, kidneys full of calcium deposits, sores on my shins, chronic cough, have lost almost thirty pounds in the last three months, and the almost constant abdominal pain and diarrhea. Yeah me. I will be 39 next month. I have been hospitalized twice in the last three months as well. I do not wish to speak ill of the Belizian medical system, some of the doctors are quite good and their equipment is not as bad as I thought it would be. That being said, why didn't they mention the possibility of Crohn's to me? They did talk to me about Celiac disease, but an endoscopy showed normal vilia with no ulcers. It did show significant amounts of bile reflux. Through my own research (on bad internet using my phone) I found a checklist of Crohn's symptoms. Check, check, check, check, check. Then I called my cousin who was diagnosed with Crohn's about 10 years ago, she said she didn't know why it hadn't occurred to her, but yes, I was showing the same symptoms she had when she was diagnosed. I am not usually one to self diagnose, but if it quacks like a duck... So I am going to begin changing my diet myself, I don't know yet if I should take the anti-nausea and bile inhibitor medications they prescribed, but I will keep a food journal and see what happens. My cousin suggested rice as a good place to start so I will ne ricing it up for several days and start trying to add new foods as I go. Because of my kidneys I have to avoid all dairy and phosphates (beans, peanut butter etc). I have also been advised to try and go gluten free. I will talk to the doctors about this at my next appointment, but it is a rather long trip to get over there so I can't just pop in. Any help, advise, links, anything at all that can help me will be appreciated and welcomed. I am feeling pretty down right now, probably because I am still in pain and nauseated. I know that when I feel better my natural can-do will power me through, I just need a day or two without feeling like this.

 

[LisaL]

Hello Fendeesha and welcome to the forum. I am sorry that you are feeling so bad. There is a ton of good information here...look around and you will see links to information about changing your diet, medications, etc.

Making changes to your diet is an easy place to start, and hopefully you will feel some relief. Generally speaking,a low residue diet is the easiest to handle-rice is a good start. Try to avoid raw fruits and vegetables. Easy to chew foods like well cooked chicken, potatoes, etc are good too. As you introduce foods, try to do so slowly, so that you can try to identify the foods that trigger your abdominal pain. This is where everyone is often very different.

As for your other symptoms, I too have had sores on my shin/leg and diarrhea. I have never had any treatment for the sores, but I believe that others have tried cortisone creams. If you have what I have had, erethyma nodosum, it is very painful. I know there is a special section for skin related problems here too.

What kinds of medicines has your doctor prescribed. Let us know and we can help you understand what they might be for and whether others have had good luck with that medication. There are also medications for nausea if thatbecomes a serious problem.

I hope you are feeling better soon. I know your doctor is far away, but don't let the pain get a head of you...stay in touch with him or her so that you can get some help.

Good luck,
Lisa

 

[Angrybird]

Hello and welcome the forum.

Out of interest did the docs do blood tests and if so did this include your vitamin levels? Also were biopsies taken during the scope? With regards to the diet side of things it might be worth seeing if you can go onto liquids only - perhaps special shakes if these are available, I am not sure if this would be an optn for you but some folks do really well on enteral nutrition as this can help calm the tum down. When is your next appt to see the docs?

AB
xx

 

[fendeesha]

They did not do biopsy with the scope. They did a CT scan with contrast, but the doctor said it showed no obstructions but I did a swollen cervix. I see a different doctor about that next week. For now the medications they have me on are Nitazox, which is an anti-parasitic drug (Central America remember?) but that was only for a few days, finish that today. Omeprazole which is a stomach acid reducer, and Domperidone which is an anti-nausea medication. They had to order the Domperidone because it is hard to find here, and it is not approved in the US. I won't see the GI doctor again until the end of January.

 

[fendeesha]

Also, the doctor seems focused on upper GI when my pain is in lower. The endoscopy he did was oral. How do I convince him to look lower?

 

[Angrybird]

Are the docs aware of your family history with crohn's? For most here the docs look lower with a colonoscopy before then checking higher up and biopsies are always worth having because even if the bowel looks ok these then confirm a diagnosis because they show what has been going on underneath the surface, the fact that your pain is lower should show them that they are potentially looking in the wrong area.