My biggest pet peeve of the j-pouch serves isn't the recovery, the need to go to the bathroom multiple times a day, or the restricted sleep. It is when people use the word cure in conjunction with j-pouch surgeries. J-pouch surgery is NOT a cure! I hate it when patients say it, but I hate it even more when I hear that doctors are telling their patients it is a cure.
Ulcerative Colitis is an autoimmune disease. Autoimmune diseases rarely keep to one specific organ. This applies to Ulcerative Colitis as well. UC can lead to arthritis, osteoporosis, eye problems, kidney problems, and liver problems to name a few. These complications continue even when the colon is removed. It is because of these extra-intestinal problems, that the Uclerative Colitis will continue to follow you even after j-pouch surgery. No matter how many years after j-pouch surgery you will still need to disclose your once Ulcerative Colitis diagnosis.
The other reason it is not a cure is that you can still get UC! How is this so, you ask, if you've had your colon removed? The answer is a small amount of the rectum is usually kept to maintain continence. This bit of rectum can still flare up with Ulcerative Colitis even years after j-pouch surgery. When this occurs it is referred to as Cuffitis. I can tell you from experience Cuffitis is just as painful, if not more so, than a colitis flare. The inflammation is centralized to a much smaller area making the pain more intense, plus the stool passing by is more acidic without a colon. Good news for those that are diagnosed is that it is usually easily resolved with suppositories.
The final reason j-pouch surgery is not a cure is because even with a complication free recovery your life will never be the same as when you had a colon. The small intestine was never meant to be a colon and no matter how hard it tries it never will. You will still need to go to the bathroom more often than the coloned person. You will have more gas than the coloned person and only the luckiest can fart like a coloned person. Otherwise you will be limited to certain positions for farting or only farting over a toilet. A j-poucher will also have to always be careful to not become dehydrated especially with illnesses. Pushing fluids takes on a whole new meaning.
So while many will say j-pouch surgery is a cure for Ulcerative Colitis because you no longer have a colon to become inflamed do not be fooled. There is more to Ulcerative Colitis than the colon. Just like there is more to j-pouch surgery than removing the colon. So let me repeat j-pouch surgery is NOT a cure!
You are completely correct. J-Pouch surgery does NOT cure anything. At least honest scientists admit this here:
ReplyDeletehttp://www.ncbi.nlm.nih.gov/pubmed/22876035
Everybody should confront their surgeons with this information.
Yes, J-Pouch surgery saves the lives of many people are are seriously and extremely sick. However, it only manages it. Severe ulcerative colitis is systemic. Surgery does NOT normalize the immune system where it stops attacking itself. And ulcertaibe colitis is a serious auto- immune diseasse. Even the mere suggestion that surgery is a "cure" is absurd to anybody who thinks about it for a while.
Many surgeons either lie deliberately to patients or are grossly misinformed.I think it is likely that some people have had this surgery forced on them who did not truly need it because of greedy surgeons.
"I can tell you from experience Cuffitis is just as painful, if not more so, than a colitis flare. The inflammation is centralized to a much smaller area making the pain more intense, plus the stool passing by is more acidic without a colon." Thank you for this. I thought I was going crazy thinking that this pain feels like UC before my surgeries. Unfortunately twice a day suppositories are not solving all of my issues, but I am also 37 weeks pregnant and I guess that plays a part as well. Thank you for validating my feelings, as many people around me think that the surgeries were a cure, and just want to hear that I am doing well. Truth is, sometimes I am. But when I'm not, I'M NOT! It sucks!!! I have high hopes that with the delivery of the baby, I'll return to a new normal with less colitis pain.
ReplyDelete