I am a 54-year-old female. I was diagnosed with severe ulcerative colitis when I was 22 years old. I was treated and never had another issue. At age 38 I was diagnosed with breast cancer and had a mastectomy and reconstruction. The reconstruction resulted in a muscle being removed from my abdomen to build a new breast. I ended up with a surgical hernia in that area of my lower abdomen and had to have a mesh screen surgically put in to correct that bulging.
In my early 40s I started to have very severe pain in my right arm. I was diagnosed with Crohn's disease and told it was referred pain. (I call it cromes disease because I don't like the name Crohn's.) I was also told I was misdiagnosed in my 20s and that I most likely had cromes disease then and not colitis. I did not like my GI at that time and I did not believe him. I had no issues other than the pain in my arm. He gave me Pentasa, 16 pills a day and I took them for a while and then my arm stopped hurting and I just went on with my life.
When I was 47 years old the hernia repair gave way and I had to have another screen put in. A few weeks after the surgery, I had my first intestinal blockage. I was in the hospital for five days with an NG tube and a surgeon anxious to do exploratory surgery on my intestines. I was told I had adhesions. These doctors all knew my prior history. I had blockage after blockage and many hospitalizations, always told it was adhesions or the screen they had put in for the hernia was caught up in my intestines.
I finally went to a different surgeon to have the adhesions operated on. My life had become unmanageable. He took one look at my CT scans from more than one hospital and told me I had Crohn's disease. It was awkward to tell him, oh, yeah, I was diagnosed with that a few years ago.
I got back on Pentasa, changed my diet and starting in 2009, I had four good years. Then I had another blockage. This was the worst ever. I didn't think I would survive. I now refuse the NG tube. I don't believe it makes any difference at all. And it got where they couldn't even put it in. I think scar tissue developed or something. The last person who tried, I just had blood running down my face as he kept cramming that tube into my sinuses.
I had a colonoscopy done a few months ago and it could not be completed because of a strictured area. It's a terminal illium stricture, I think. I don't get much info from my GI. He rushes me out the door and has a very heavy accent. He did tell me that in 10 years the strictured area, without treatment, will be completely blocked and I will have blockage after blockage and surgery after surgery.
He put my on Humira and I had such high hopes. It's been six weeks, and pretty much from the very beginning, my lower abdomen became distended. I also had increased cromes issues, mostly constipation. (I'm sorry this is so long.)
I finally got to see my GI yesterday and he immediately told me that I have a hernia. The thing is that the swelling is right where the mesh screens are, but the swelling is on both sides. It's just somewhat worse on the hernia side because that area isn't quite as strong as the good side.
I find it hard to believe that six weeks ago my abdomen was flat and now it protrudes like a pot belly and it's just a coincidence that the hernia gave way as soon as I injected that drug around my belly button. He said Humira would NEVER cause what I now have.
He told me to stop the Humira since it's not helping, go see my surgeon who did the hernia repair -- the same doctor who let me be hospitalized five times in two years because he couldn't see I had Crohn's disease -- and he ordered the camera pill test, which he told me a few weeks ago he wouldn't order for me because he was afraid it wouldn't make it through my body and would cause blockage.
I don't know if my hernia is back. I don't know if Humira caused the swelling.
I do know that when I have had blockage and after I would get home from the hospital, my gut would be distended the way it is now. No pressure or pain, just, I think, the intestines got so swollen that it would take a week or more for everything to flatten out again.
I am at a total loss. My Humira nurse says that after six weeks I should notice some improvement. Even if the swelling isn't from the Humira, my cromes issues are worse than before.
Again, forgive the length of this, anyone who is still reading it. My story is just complicated because the hernia repair is in the same place as the blockages and the damaged intestines.
At least I think so. The same area is where I get swollen when I've had blockage.
I guess my question is: Has anyone had this kind of major lower abdomen swelling and/or distension that was caused by Humira?
Thank you.
In my early 40s I started to have very severe pain in my right arm. I was diagnosed with Crohn's disease and told it was referred pain. (I call it cromes disease because I don't like the name Crohn's.) I was also told I was misdiagnosed in my 20s and that I most likely had cromes disease then and not colitis. I did not like my GI at that time and I did not believe him. I had no issues other than the pain in my arm. He gave me Pentasa, 16 pills a day and I took them for a while and then my arm stopped hurting and I just went on with my life.
When I was 47 years old the hernia repair gave way and I had to have another screen put in. A few weeks after the surgery, I had my first intestinal blockage. I was in the hospital for five days with an NG tube and a surgeon anxious to do exploratory surgery on my intestines. I was told I had adhesions. These doctors all knew my prior history. I had blockage after blockage and many hospitalizations, always told it was adhesions or the screen they had put in for the hernia was caught up in my intestines.
I finally went to a different surgeon to have the adhesions operated on. My life had become unmanageable. He took one look at my CT scans from more than one hospital and told me I had Crohn's disease. It was awkward to tell him, oh, yeah, I was diagnosed with that a few years ago.
I got back on Pentasa, changed my diet and starting in 2009, I had four good years. Then I had another blockage. This was the worst ever. I didn't think I would survive. I now refuse the NG tube. I don't believe it makes any difference at all. And it got where they couldn't even put it in. I think scar tissue developed or something. The last person who tried, I just had blood running down my face as he kept cramming that tube into my sinuses.
I had a colonoscopy done a few months ago and it could not be completed because of a strictured area. It's a terminal illium stricture, I think. I don't get much info from my GI. He rushes me out the door and has a very heavy accent. He did tell me that in 10 years the strictured area, without treatment, will be completely blocked and I will have blockage after blockage and surgery after surgery.
He put my on Humira and I had such high hopes. It's been six weeks, and pretty much from the very beginning, my lower abdomen became distended. I also had increased cromes issues, mostly constipation. (I'm sorry this is so long.)
I finally got to see my GI yesterday and he immediately told me that I have a hernia. The thing is that the swelling is right where the mesh screens are, but the swelling is on both sides. It's just somewhat worse on the hernia side because that area isn't quite as strong as the good side.
I find it hard to believe that six weeks ago my abdomen was flat and now it protrudes like a pot belly and it's just a coincidence that the hernia gave way as soon as I injected that drug around my belly button. He said Humira would NEVER cause what I now have.
He told me to stop the Humira since it's not helping, go see my surgeon who did the hernia repair -- the same doctor who let me be hospitalized five times in two years because he couldn't see I had Crohn's disease -- and he ordered the camera pill test, which he told me a few weeks ago he wouldn't order for me because he was afraid it wouldn't make it through my body and would cause blockage.
I don't know if my hernia is back. I don't know if Humira caused the swelling.
I do know that when I have had blockage and after I would get home from the hospital, my gut would be distended the way it is now. No pressure or pain, just, I think, the intestines got so swollen that it would take a week or more for everything to flatten out again.
I am at a total loss. My Humira nurse says that after six weeks I should notice some improvement. Even if the swelling isn't from the Humira, my cromes issues are worse than before.
Again, forgive the length of this, anyone who is still reading it. My story is just complicated because the hernia repair is in the same place as the blockages and the damaged intestines.
At least I think so. The same area is where I get swollen when I've had blockage.
I guess my question is: Has anyone had this kind of major lower abdomen swelling and/or distension that was caused by Humira?
Thank you.
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