Long road

[neallyje]

long road

Hi-This is my story advice welcomed. In October of 2009 I was five months pregnant. I had been having some side pain and typical sinus troubles etc. I went to our local clinic and was given an antibiotic for a sinus infection. By the first of Nov. I was back with 103 temp and the pain was still there. I was told I had a bacterial infection, given more antibiotics and sent home. The pain became so bad I couldn't stand. I went to the hospital and was told I was suffering from pulled round ligaments or maybe chest wall pain. I was hospitalized 9 times between Oct. and Feb 17 and took pain meds every 4 hours for those 5 months. I had a beautiful baby and thank God the baby was healthy. I was in the hospital 4 days and sent home. Ten days after giving birth the pain came back in full form. I went back to hospital and had a second surgery. This time a 4lb mass was removed from my abdomen. My colon and appendix had burst in Oct. I have since suffered blood clots and the typical crohns symptoms. I don't know how much pain should cause alarm. My only experience with a "flare" was during my pregnancy and I perferated. What should I feel? How much pain is normal?

 

[silveyk]

A perforation is serious as it results in peritonitis. What was the 4-lb mass removed from your abdomen? Was it colonic, ovarian, uterine? Why do you think you have Crohn's? Did a surgeon note "creeping fat" on your bowel during your surgery or have you had a positive colonoscopy? Also, your pain...on a scale of 1 to 10, how bad is it? Where is it located? Is it sharp or dull? Is it constant or intermittent? What makes it worse? What makes it better? Do you suffer diarrhea, constipation, nausea, vomiting? Is the blood you talk about black, maroon, or frank red? Do you see it on your toilet paper or on your stool?

Dr. S (spouse of a Crohn's sufferer)

 

[neallyje]

reply to Dr.S

The infection "walled" itself into this mass that I was told saved our lives. It was a combo of my appendix and small intestine which was partially removed. I have had 4 colonoscopies all agreeing on disease. My pain is 3-4 on good days and 6-7 on others but always present. As far as what triggers this I am working on it. I am paying attention to foods, stress levels,etc. I am nauseated and have diarrhea. I take 1-3 immodiums/day. I am starting Humira today. Prior to my pregnancy I did not experience any symptoms. Thanks for your response. Power is knowledge!

 

[ameslouise]

Hi Neally and welcome!

Glad you had a healthy baby after all that! There are some reports/findings that appendicitis is related to subsequent Crohn's dx.

The question of how much pain is normal - it's different for all of us as to how much we experience daily or during a flare. Pain is an indicator that something is wrong! So for you to have pain daily ranging from 3-7 is not a good sign.

Have you asked your doctor for a quick round of pred to take down the inflammation while you wait for the Humira to kick in?

Good luck - I hope the Humira does the trick! -Amy

 

[xJillx]

Hi and welcome! Wow, you've been through a lot. I am glad baby is doing well, and I hope you can start feeling better real soon. How did the first dose of Humira go?