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Please lend advice/Crohn's since I was born/About me/Newbie

Hi :ysmile:
This is the first time I have ever gone on a forum for Crohn's disease. I am sure everyone has interesting stories of how they were diagnosed, however, I have an extremely odd case, from what I am told. I was born with Crohn's disease (supposedly). I have had intestinal, abdominal, and acidic stomach pain for my entire life. I got so used to being in pain my whole life and was told that there was nothing wrong with me, because nobody could figure me out for so long, that I just decided to ignore the pain. Finally, at the age of 21, I was at work, and was bending over, unable to stand up straight, while holding my stomach, in severe pain, and was trying to sell something to a customer. My boss had enough, she let me know that I had to go see a doctor immediately, or else I would be in serious trouble at work. I had been written up because of calling in sick a couple of months before. I left work, and went straight to the urgent care, where I met a doctor that saved my life.
This doctor, felt my stomach, me wincing in pain as he was feeling around, and said "You have so much inflammation all over, you have to go to the emergency room NOW!". I was very scared, because my whole life, no doctor had ever said that to me. Practically crawling into the Emergency room, I was taken in quickly. I had about 15 doctors in the room trying to diagnose me. Before they had a CT scan or anything, they assumed it was appendicitis, and a surgeon was so sure of it, he didn't even want to take a second look! All of the other doctors agreed with he surgeon, accept for one, my GI doctor now. He said he wouldn't let anyone operate until he had a CT scan. Luckily, my incredible boyfriend was there, and helped answer questions the doctors asked. When they asked if I had pain often, my response was, well not really, im just sensitive. My boyfriend quickly interrupted me and said, no, she is always complaining of pain. They found 32 ulcers lining my intestines, my intestines were about to rupture, and if i hadn't gone to the emergency room that day, I would have died. I learned that I have an extremely high pain tolerance, according to the 15 doctors I saw!
It's been three years that I have been diagnosed with severe Crohn's disease. I have been on aziprothrone, Humira, Imuran, Entercort, Prednizone, Cipro, Norco, dialidin and just about everything my doctor could think of. Nothing seemed to help my case. In fact, I was just diagnosed with PANCREATITIS from the Humira. I have formed a dependency on pain killers and take steroids more often than I'd like. I can not eat anything raw (salad, uncooked vegetables, fruits, and etc.), no lactose, nothing creamy, no red meat, no brown rice (wheat bread, etc.), absolutely no caffeine, and nothing with alot of sugar (this is a new one, I think because of pancreatitis). That pretty much leaves me with absolutely nothing to eat without being in pain!!!

My doctor has pretty much thrown his hands up in the air because he has no idea how to treat me. I need serious help, and am SO frustrated with being in pain. Pain killers no longer help my pain much at all, I hate that I am addicted and don't know what to do about it. I have to have a job and a life, and feel I can't do that while Im in so much pain everyday, I feel like my Crohn's runs my life, as well as pain killers. Not to mention, my boyfriends mother is addicted to pain pills and she doesn't really have pain, so I have to hide that I even take pain killers from him because he hates seeing them. Someone please give me some advice. I am so depressed and have so much anxiety over this.

Respectfully,:heart:
Crohn's Girl
 
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Jennifer

Adminstrator
Staff member
Location
SLO
Hi Crohnsgirls and welcome to the forum! :D May I ask where your Crohn's is located and what your symptoms are now?

Sounds like you've been through a lot! Has your GI talked to you about the possibility of surgery/bowel resection/strictureplasty? Sounds like you may be dealing with a lot of scar tissue and no medication can help with that. There are other meds out there like Remicade and Cimzia just to name a couple yet like I said they can't help with the scar tissue yet may help you to stay in remission if you were to have surgery. Recurring inflammation builds up a lot of scar tissue over time which creates a narrowing and that narrowing/stricture can be painful.

Here's the surgery section of the forum if you'd like to take a look through it: http://www.crohnsforum.com/forumdisplay.php?f=71 It also has a sticky up top where people share their surgery stories. I'm not trying to scare you or anything like that but after so many years of inflammation going on you're bound to have scar tissue and if medications aren't helping at all (even steroids) then its very possible that you're main battle is with scar tissue rather than inflammation. I was diagnosed when I was 9 years old and had my resection when I was 17 because I had a lot of scar tissue that was causing partial blockages. Ever since my resection I've been in remission and its been 14 years now.
 

kiny

Well-known member
If GI don't know what is going anymore then you need someone who does imo. If the budget allows you to I would go to a good immunologist and a good lab to see what is actually goin on with you. Many GI know very little about this disease and just try drugs until one sticks, the fact you have been on so many drugs is a bit worrysome to me.

The story about the operation is silly too. You don't operate on someone before you know what is going on and before pictures are taken and it's discussed. Only in emergencies where the patient is in immediate danger should they operate, they sound like clutses, no offense.
 
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