Long long time ago, 1977 I was diagnosed with Crohn's. Highly rare disease back then. Answer was to do a total colectomy and tell me I would have little to no water absorption for the rest of my life. So for the last40 years I've rarely seen a Dr. But have always had 20-25 trips to the toilet daily. A year ago July 2015 ended up in hospital dehydrated they did a colonoscopy, said I have active Crohn's and started Humira 7/15, then July 2016 Humira stopped working, and my joints STARTED hurting- something I had never ever experienced. It's my hands, hips and knees mostly, and muscle aches. So my question is.... what are the normal symptoms of Crohn's? Why take these biologicals? And if Crohn's is only about the trips to the toilet (for me) why take ANY meds? (Ps; they started Remicade 6 weeks ago, less trips and formed stool, but big deal considering the meds risks)
Crohn's diagnosed 1977
- Thread starter Meljordan
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Some people get severe pain with Crohns too, and blockages/narrowing or holes through to their bladder etc that lead to surgery, as Ron says. You've done well to cope for so long with so many visits to the toilet without opting for surgery, I'm not sure I could. I had a couple of months with constant urgent need for the toilet and by the end of it I'd definitely have had surgery if that had been the only way to deal with it. I was getting a bit of pain and my weight was dropping like a stone, and quality of life was not good at all. Luckily, in my case, steroids helped massively, but I honestly don't know how you put up with it for so long.
Obviously symptoms are different for everyone. I had a combination of constipation and diarrhea before I got diagnosed and put on Humira. What made me suffer most was fissure, recurrent perianal abscesses, and a fistula. I also have joint pain, mostly my knees, lower back and neck these days but over the years has included hands, feet, hip, elbows, shoulder.
As for the risks of medication: the benefits of decreasing the constant inflammation in your gut usually outweighs the risks and side effects. All the inflammation puts Crohnies at a higher risk for cancers. On Humira, Ive gotten skin abscesses twice and I catch colds/bacterial infections more easily. My GI symptoms are virtually gone, including recurrent problems with fissures, abscesses, and a fistula.
For my joint pain I still don't have a definately diagnosis but my rheumatologist thinks it is Crohn's related. There'should no real way tonknow for sure since I test negative for any other arthropathies. I have been taking Plaquinil and it has been amazing for me.
As for the risks of medication: the benefits of decreasing the constant inflammation in your gut usually outweighs the risks and side effects. All the inflammation puts Crohnies at a higher risk for cancers. On Humira, Ive gotten skin abscesses twice and I catch colds/bacterial infections more easily. My GI symptoms are virtually gone, including recurrent problems with fissures, abscesses, and a fistula.
For my joint pain I still don't have a definately diagnosis but my rheumatologist thinks it is Crohn's related. There'should no real way tonknow for sure since I test negative for any other arthropathies. I have been taking Plaquinil and it has been amazing for me.
The short answer is because Crohn's is about a lot more than trips to the toilet. The biggest health threat a Crohn's patient faces is not the adverse side effects of medication. It is the adverse effects of untreated Crohn's. You've already seen some of the serious damage that Crohn's can do - resulting in your surgery. And unfortunately it appears that Crohn's is not done with you yet.
Serious risks from meds = low. Serious risks from untreated Crohn's = high.
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I have melanoma cancer and this year was diagnosed with crohns disease. Pain is an everyday thing in my life. I do 6 month intervals with chemotherapy for my melanoma. But only to treat symptoms. I have many of the same symptoms as many of you. I also have cysts in my breasts, that is very common. I think that medicine has come a long way. The journey is yours to take, whatever works for you. Keep your chin up. We are alive and breathing.
I started off with severe arthritic mimicking pains before the onset of abdominal cramping, diahrea etc. The arthritic symptoms havd amplified since then. I have to wear wrist braces a lot and my joints and muscles are a pain to deal with. I haven't talked to many people who started off with arthritis symptoms considering the common symptoms indicating Crohn's are extreme weighloss, diahrea, abdominal pains etc.
I've also questioned why take medication if it only elevates some of the typical symptoms. For me I decided to go on medication as a preventative measure. I was in the early phase of Crohn's---no surgery, no severe ulcers. I wanted to prevent surgery at all cost. My father has also had Crohn's for decades now and he's had every surgery possible---been on every med--and he's pretty much at the point now where there isn't much else they can do.
Do something while you still can and before it gets worse.
I've also questioned why take medication if it only elevates some of the typical symptoms. For me I decided to go on medication as a preventative measure. I was in the early phase of Crohn's---no surgery, no severe ulcers. I wanted to prevent surgery at all cost. My father has also had Crohn's for decades now and he's had every surgery possible---been on every med--and he's pretty much at the point now where there isn't much else they can do.
Do something while you still can and before it gets worse.
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