Needing info and support

I was diagnosed with Crohn's disease when I was 15 after 2 years of trying to figure out what was wrong.
I have been on Asacol, Prednisone, Nexium, Bentyl, Amptriptline (spelling?).

I am currently 24, on Asacol, Bentyl when needed and nexium when needed. Have some Xanax and ambian when I need that as well. Also Hydroconde because honestly my body feels like its 75+.

My diet is for the most part good I know what foods cause me flare ups, ect. I eat very little processed foods, don't drink soda, can't do a lot of sugar or any really and stay away from all dairy.
My biggest struggle is being 24 and drinking, drinking is an automatic way to make me sick.

I am currently lost, confused and down right scared.

My friends family and peers do not understand that more that 1 glass, beer or whatever will keep me on the toilet for most of the morning and then a few more times during the day until pretty much everything is out of my bowels. Being 24 sometimes I just ignore that I have it drink then suffer, and suffer and suffer.

My boyfriend and I are talking about marriage and starting a family.

I have so many questions about marriage and a baby with my crohns. I have never let anyone see me sick, besides my dad. If I am in a flare up I usually don't let people know and I just deal with it. I make jokes about it to close friends because honestly if I don't joke I get scared.

What are some things I should have my other half , read or research? He knows that I have Crohn's and that does not scare him, he tries so hard to make me feel better and help with my everyday task because I look exhausted all the time.

Most of the time I feel like I am just a zombie. When I work out I feel great, but working 50 hours a week, having a house an elderly father, 2 dogs and a relationship is exhausting.

I will go into a period where I am fine for about a week then I have a bad week. But I fight fatigue, body pain, I feel sore all the time like I just ran a marathon. It effect my skin causing eczema or what looks like it?!

Does this cycle ever stop? What medicines can I try? Or am I doing to much with not enough rest? HELP!

Hi Mari_belle, welcome to the forum!

You are doing a lot of things right and maybe just a couple parts of your life could use a tweak. You're young and figuring out how to get through this life and sometimes that's hard. I'm glad you have found the forum and I hope we will give you the support you need.

First, I think that you should go to your GI and take your boyfriend with you. It sounds like your current meds are not really covering your symptoms adequately. I know it took me a while to admit that I just wasn't feeling great - and it was my rheumatologist who finally pointed out to me that having fatigue and joint pain was not a way to live, even if I didn't have diarrhea all the time, or bloody stool. I mean, you should have higher expectations of your treatment protocol. Your remission goal should be to eliminate ALL of the symptoms of Crohn's, and that includes your skin and your joints and your energy level.

I'm sorry your friends are such ******s that they push you to drink. I think maybe you need different friends! I hope your fiancé is not included in the list of people who push you to drink.

When you take your fiancé with you to the GI, make sure you have him with you when you meet with your GI so he can ask questions too.

If you read the info on the biologics they sound really scary. You should read the info so you are informed, but... Don't let it freak you out. So many people have taken them and not gotten sick or infections or cancer or whatever. I have been on one biologic or another since 1999 and I've had 3 kids and took my biologics throughout the pregnancies and even breasted while taking them.
They can be very expensive, but you can get them approved through insurance. Your doc can help you do that. His office has probably done it for patients before.

Usually the first line biologic docs try is called Remicade. After that Humira. There are others that they try later like Cimzia, Simponi, stelara. These biologics block inflammation through something called TNF-alpha blockers. They work (usually) pretty quickly (within the first couple of doses, everyone is different). Stelara is not a TNF-a blocker. It blocks inflammation through Interlukeins 12&23 and so if you fail with a TNF-a blocker, sometimes docs will go to stelara because it has a different mechanism of action. The biologics won't last forever. They can last a year or 8 years, but eventually your body will build up immunities to it and you will switch to another one.

Sorry for the science lesson, but I thought it might be helpful.

It sounds like your GI either doesn't understand how sick you really are OR he is not the right GI for you. Is your GI an IBD specialist? That is really important for someone with Crohns to have. Not all GI's are equal and you need someone who really understands the nature of your disease and how to treat it.

You sound like a wonderful daughter to take care of your father. If you really do have to work that much then you really need to try and structure your life around making sure that you can handle it by getting on the right meds and taking it easy on yourself in all other areas.

Is your boyfriend supportive? It seems to me you are a private person and that is ok, but this illness is not something you have to hide. You might feel better if people were more aware of your health so that you don't feel like you have to suck it up and put on a happy face all the time. I worry that the stress you are under is making you even sicker.

You have a lot of reason to hope for health and relief. I hope we can support you and you can get the help you need from your doctor.

How would I know if my GI is that, when I call I can just ask?

Thank you for the science lesson I need it!

The boyfriend is very supportive VERY, so I am going to sit down and talk with him tonight.

I think its time to find a new doc!

My rheumy tested me for celiac disease and I don't have it. But after struggling for years with inconsistent bowel movements, some bowel pain that might or might not be inflammatory and a lot of tests to eliminate the obvious, my GI finally suggested I just try a GF diet. It worked wonders.

What the GF diet did for me: whatever joint pain I had even with the sulfazine disappeared. My loose stool got solid. My ability to concentrate improved (although I wasn't aware that it had gotten bad!).

I still struggled with inconsistent motility, and I've been using psyllium capsules to help improve that part of my life.

It is possible to have an intolerance to gluten and not have celiac disease. It may be that your chronic inflammation has affected your ability to digest gluten. It is quite well known by now that people with Crohn's have a disordered gut microbiome, and it is also well known that digesting gluten requires a certain population of gut bacteria in addition to enzymes your body provides - it is not surprising to me to figure out that I cannot tolerate gluten.

I do not take it wrong at all, I know I do too much. I would like to thank everyone for the information and support!