My Crohn's Experience.

So, I guess I'll tell y'all about my life with Crohn's/vent/whine. lol. I just feel like typing.

Ever since I was born I had stomach problems. I couldn't stomach breast milk or the formula, so I was basically living off of pet milk (evaporated milk.) Yeah, I don't know. lol. Anyways, I was always a nervous child as I grew up. Almost everyday my stomach would hurt all the time, especially before school and sometimes I would cry before school. I was just lactose intolerant at the time. By the time I was 14 I've been noticing a change in my bowel movement. It would always be soft stool/diarrhea and it would always sound like I was exploding. (TMI, sorry.) lol. I just ignored it. About the time I turned 17 I noticed my symptoms have been getting worse. This was also around the time my parents were separated and about to get a divorce. I started have severe abdominal pain, blood in the stool, always tired. I finally decided to man up and go see a gastroenterologist. I told him all of my symptoms (I was embarrassed at the time) and he scheduled a colonoscopy. I was TERRIFIED! But honestly, the worst part of that was the day before with no eating and drinking that horrid drink! BLECK!!! I remember the day of my colonoscopy. Shaky, scared, nervous. As soon as I was lying on that hospital bed after I received my IV and waiting in a dim room alone for the exam room to be ready, tears were shedding. They had to get my Gastroenterologist to come and calm me down. I was worried for nothing. I was asleep the whole time and don't remember anything. Waited a week or so for the results. I get a call from my mom, since I wasn't old enough to receive a call from the nurse myself to get the results, the first thing I heard was "Welcome to the club, you have Crohn's Disease." (My mother and her father have it as well, so it's hereditary.) I didn't know what to say..More tears started and I was so scared thinking, why me? I was basically a lab rat after then. I was prescribed to Entocort and Lialda. Switched my doses every doctor visit because my stool switched from soft to hard. The good news was, they caught it early. Although, they caught it early, doesn't mean it wasn't going to get worse. Which it did. I'm 19 now, for about a year I've been struggling with "hemorrhoid" problems, so I thought. I was then prescribed on anucort. The suppositories worked for a little while. I've complained enough about these hemorrhoids, I guess my dr. got tired of it, and my family. My family was like, oh it's supposed to hurt like that. Hemorrhoids are literally a pain in the butt. I didn't think hemorrhoids would hurt this bad. There was a lot of blood in the toilet, and also my underwear. This couldn't be normal, nothing worked. I also came to the point where I would cry and cry about it. So, April 2012, I was scheduled a sigmoidoscopy. Let me tell you.. Enemas are NOT my best friend. I couldn't do it. It probably took me about an hour and a half to finally do BOTH! After the procedure and everything, I find out that my crohn's had spread to my anal cavity and the excruciating pain was anal ulcers. My doctor told me that when he went to put the sigmoidoscope in, I jumped. If I felt that when I was sedated, then it was REEEALLY BAD. So, that's how I was introduced to Humira. Stopped all of my other drugs that I had to take 4 pills everyday to a shot that I'm SO afraid of just once every other week. Which does work. Me and the Humira is getting better. Maybe. lol. And of course like every other Crohn's patient I'm always feeling sick. I also have Migraines to top off all of this Crohn's mumbo jumbo. I'm always nauseated, my stomach hurts every now and then, and so does my head. :/ There's never a day where something is not wrong with me. I think that's everything. Sorry for the TMI and this loong novel you had to read. If you did read it all, thanks for your time. I also love reading other people's experience. One disease and so many different stories. My heart goes out to the ones who have this disease severely and who's sickness is much worse than mine. I was so embarrassed to even talk about all of this stuff and when I realized that they have websites and groups like this on Facebook and stuff, I was so interested. It's kind of almost like a young teenage girl obsessing over the hot new boy band. lol. Just want to let y'all know that I admire each and every one of you. Crohn's disease is serious and we fight this each and every day. Hugs to all! Just felt the need to share my story. I'm new to this site and I think I will use it more often and explore it more than I already did.

Thanks. :ghug:

Welcome to the forum Klynn2393!

I am sorry to hear about all of the troble you have had growing up and since your Crohn's Disease diagnosis. I am glad you have had some relief with Humira, however it does not sound like the side effects are pleasant.

We ae glad you did find us and hope you do not feel embarrassed here to share your thoughts and feelings. As you said we all share different stories, but we all share the disease and understand what it is like to live in world where many others can not relate to us.

I hope you will continue to use the forum to seek information, support or just to continue to read other member's stories. We are there for you however you need us!

Take care and looking forward to seeing you around the forum.

Just wanted to say hey and don't be embarrassed. I know it can be difficult talking to people in normal life but once you've been there it becomes almost common place so feel free to discuss away

I have some very tolerant people in my life but I know they get tired of talking about it sometimes and its nice to have this support here.

I wish I had your optimistic and good sense when I was your age, I don't even think I have it now. At the end of the day every one of us is a stronger person for having this disease because of everything we have to go through. All of the medications, exams, doctor visits and scans really start wearing on you over the years. Make sure to keep up on getting your vitamin levels checked. I know Humira is tough to be on and the uncertainty of it can make for some sleepless nights. But if you trust your GI then stay with them. Mine flat out tells me he is looking out for me and I absolutely need it. It's still not a comfort on injection day lol but having that extra person looking out for me is a positive thing. Have you started a probiotic and/or a Crohns diet yet?

Hey, so I did what I did in school and like skimmed your essay. You sound a bit like me in the treatments and procedures sitch. I was diagnosed at 17, started out rough. I was deathly afraid of the colonoscopy too, but it went well. Already had 2 of them. And yeah, the drinking the day before is def the roughest part. After that was put on asacol, liadia, pred. None of them worked. Finally after my last colonoscopy last year I was put on Humira as well. I love it and its working the best, don't even mind the shots. Anyways I hope you get 100% soon. I know it's tough being younger and having this prob.

Thanks, everyone, for the kind words.
Thermo, I try so hard to be optimistic with this, believe it or not, I usually always think negative and I'm trying so hard to change that. I haven't tried any probitotic or crohn's diet. I should try a crohn's diet, but sometimes a diet may seem hard to follow. I'll look into it.

Yeah staying positive is the only way I could have made it this far, I try to never say no and always look for the positives in everything. I also recommend not letting any stress get to you whatsoever, no matter what comes your way try to effectively shut it down as quickly as possible or walk away from it. If you are looking for a probiotic I would recommend asking your doctor about VSL#3 it's really expensive but it has been studied the most with promising results. If your insurance doesn't pay for it then get an equivalent brand with all of those strains in it. I am terrible at diets too, my Crohns (For now) never gives me problems when eating terrible things so it's hard for me to eat healthy as food is so much of a comfort for me. The best thing I can recommend if you can tolerate it is add more anti-inflammatory foods in your diet. For example avocados, mushrooms, fish, chicken, garlic, rice, tea. Certain foods will naturally help your body with inflammation and I have found benefit in increasing these in my diet over the long term. Let us know how things go, good luck!

Yes, stress is my main struggle. I stress over every little thing. And I can basically eat whatever, it's just I have to limit my dairy products and corn. I can probably have corn once a month, maybe. And thanks, I'll surely let y'all know.