Tag Archives: j-pouch

I don’t have one, but many others whose colons have been stolen now have a reattached small intestine.

Ileostomy, colostomy, urostomy: What’s the difference?

If you talk to 3 different people with an ostomy, they may all actually be living with something very different from the others. As we discussed in our first Ostomy 101 lesson, an ostomy is essentially a non-natural opening in your body by which a person releases waste, but there is more than one type. The type of ostomy is dependent on what part of the digestive tract is used to make the stoma.

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Ileostomy: This type of ostomy is made with a part of the small intestine (or ileum). It may be what-is-an-ileostomy-imageused when the entire colon has been removed (like mine) or it may be temporary following a resection or to allow the colon to heal before being reconnected. It is commonly used in patients with ulcerative colitis, Crohn’s disease, Familial Polyposis (FAP) and colon cancer. It is most often located at the lower right side of the stomach.

The poop is usually in liquid form and can be water or more of the consistency of applesauce. The individual does not have any control on the activity of the ostomy and must wear an ostomy bag, which needs to be emptied approximately 5-8 times a day.

what-is-a-colostomy-imageColostomy: This ostomy is formed with a part of the large intestine. It is used when only part of the colon is removed or when a section of the colon needs time to rest and heal and can also be either permanent or temporary. It is often used for patients who have diverticulitis, colon cancer, bowel obstruction, paralysis, injury or birth defects. There are 2 common types of colostomy that affects its placement: A transverse colostomy is on the upper part of the stomach and a descending/sigmoid colostomy on the lower left of the stomach.

The poop for the transverse colostomy is similar to the ileostomy, but somewhat more formed. The individual does not have control over the activity and must also wear an ostomy bag. For the descending colostomy, the poop is much closer to what is considered normal. The individual sometimes has control over the ostomy activity and may not need to wear an ostomy bag. In this scenario, they would wear a cap of some sort. They also have the option of “irrigating” their ostomy which is essentially an enema through the stoma.

what-is-an-urostomy-imageUrostomy: This type of ostomy is used for the urinary tract. It is actually a little more complicated than the other types of ostomies as it requires the removal of the bladder, as well as a section of the small intestine. The intestine is sewn back together, but the piece that was removed is then attached to the ureters that extend from the kidneys and is also used the create a stoma. It is only done as a permanent solution. A urostomy is most often needed due to bladder cancer, but also inflammation of the bladder or birth defects. It is usually placed on the right side of the stomach.

The pee empties into an attached urostomy bag. The individual has no control over its release. It needs to be emptied approximately every 2-4 hours.

what-is-a-j-pouch-imageJ-pouch: While not a type of ostomy, I feel the need to write a quick summary of a j-pouch. It is made after the removal of the colon when the small intestine can be reattached to the rectum and anus, forming an ileoanal reservoir. This surgery is usually done in 2 stages and involves the creation of a temporary ileostomy. It is often used in patients with ulcerative colitis (but not Crohn’s disease) and FAP.

In this scenario, the individual can still go to the bathroom in the normal fashion, however, the poop is less formed than what is considered normal.

So now you know: When someone is talking about ostomies, they will most often use “colostomy” as a blanket term, but that is likely to be an inaccurate description. Don’t be afraid to ask somebody you know about theirs. We appreciate not being lumped into a particular group, especially when each type affects individuals differently.

This is a very brief overview of the types of ostomies and there is a TON more that goes into each of these, but it’s a lot more detail than for my purposes here. UOAA has some guides with lots of good information. Images were stolen from here, here, here and here, respectively. 

Preparing for surgery #2

I feel very blessed that I have had such a positive experience with having my colon removed and living with an ostomy. Especially compared to many of the others out there that I know with an ostomy, I really haven’t had any major issues arise. However, there have been a few things that have caused me to worry a little.

Let me start by explaining a little about my previous surgery. When I had my colon removed last May, the doctor left about six inches of my colon inside me. This part is tied off and is usually left to allow for the possibility of reconnection. Basically in some cases (usually if the patient has ulcerative colitis and not Crohn’s disease), the surgeon can reconnect the small intestine to what’s left of the colon and your digestion should function in a more normal way, eliminating the need for an ostomy. I talked about this with my surgeon at our follow-up appointment a few weeks after my surgery and wrote about it in one of my blog posts, Doing A-OK.

In my case, those few inches of my colon are still pretty diseased. I can tell: I still have that feeling of needing to go to the bathroom and I fairly often still have blood in that area. Plus, leaving that portion of your colon in for many years can increase the risk of cancer in the future. I have come to terms with the idea of having it removed and making my ileostomy officially permanent, but had planned to wait until after having kids to have another surgery.

But like I said, a few issues have come up recently. There’s the joint/muscle pain that I’ve been dealing with, that could be due, at least in part, to there still being inflammation in my body. Plus, I’ve had some irritation problems in that area since pretty much just after my surgery. The final straw for me was the inflammation in my eye. Having that come up made me worry about having active inflammation in my body and what else it could possibly cause.

The week that issue came up, I called my surgeon’s office and said, “It’s time to book the surgery and the sooner the better.” I also said that I had committed to this half-marathon and I wanted to wait until after that. So we booked for as soon after that as possible: 2 days after, in fact. Just one month from today, on June 3rd, I will go back in for my second surgery to have the rest of my colon completely removed.

The recovery should be fairly similar to my previous surgery. I should be in the hospital for 5-7 days and have another 2-3 weeks of recovery time after that. Having any surgery makes me a little nervous, but I’m just ready to have it done with. Honestly, I’m not even sure that this is the root issue, but if it is, then I just want it gone, but if it’s not, then at least I will know and can move forward from there.

A lesson in IBD: part 2

I wasn’t planning on making this a two-parter, but as I was putting things together yesterday, I realized there was so much more information that I could put into one post. And while this is far from extensive, I feel that the two posts can give a pretty good idea as to what living with IBD looks like. I hope it has been educational  Happy Crohn’s Disease and Ulcerative Colitis Awareness Week!

Types of Crohn’s disease

Ileocolitis: The most common form of Crohn’s, ileocolitis affects the end of the small UNC digestive tract organs diagram stolen colon ccfa crohns colitisintestine (the ileum) and the large intestine (the colon). Symptoms include diarrhea and cramping or pain in the right lower part or middle of the abdomen. This type is often accompanied by significant weight loss.

Ileitis: This type affects only the ileum. Symptoms are the same as ileocolitis. In severe cases, complications may include fistulas or inflammatory abscess in right lower quadrant of abdomen.

Gastroduodenal Crohn’s disease: This type affects the stomach and the beginning of the small intestine(the duodenum). Symptoms include loss of appetite, weight loss, nausea, and vomiting.

Jejunoileitis: This type is characterized by patchy areas of inflammation in the upper half of the small intestine (the jejunum). Symptoms include mild to intense abdominal pain and cramps following meals, as well as diarrhea. In severe cases or after prolonged periods, fistulas may form.

Crohn’s colitis: This type affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others

Treatment

Medication: Medications are designed to suppress the immune system’s abnormal inflammatory response that is causing symptoms. Suppressing inflammation not only offers relief from common symptoms like fever, diarrhea, and pain, it also allows the intestinal tissues to heal. In addition to controlling and suppressing symptoms (inducing remission), medication can also be used to decrease the frequency of symptom flare ups (maintaining remission). With proper treatment over time, periods of remission can be extended and periods of symptom flare ups can be reduced.

There are a number of different types of medications used. If you’re interested in learning about these, CCFA’s website has a good break-down: Crohn’s disease Medication.

Surgery: Even with proper medication and diet, about 70% of people with Crohn’s disease eventually require surgery. There are several different types of procedures that can be performed. If there’s a section of the colon that is particularly bad, they can take that part out and rejoin the ends. They can also make the end of the colon into a stoma for a colostomy or take the entire colon out and make the end of the small intestine into a stoma for an ileostomy (what I have). Finally, there’s also the option for those with ulcerative colitis, to join the small intestine to the rectum and form a j-pouch, that functions, in essence, in the same manner as a normal digestive tract.

Unlike ulcerative colitis, surgery does not cure Crohn’s disease. Approximately 30% of patients who have surgery for Crohn’s disease experience recurrence of their symptoms within three years and up to 60% will have recurrence within ten years.

Prognosis

Crohn’s disease is a chronic condition for which there is no cure. It is characterised by periods of improvement followed by episodes when symptoms flare up. With treatment, most people achieve a healthy weight, and the mortality rate for the disease is relatively low. However, Crohn’s disease is associated with an increased risk of small bowel and colorectal carcinoma, including bowel cancer. It can vary from being benign to very severe and patients could experience just one episode or have continuous symptoms. It usually reoccurs, although some patients can remain disease free for years or decades. Most sufferers live a normal lifespan.

This post is merely a conglomeration of information from CCFAUNC School of Medicine, and Wikipedia. Since this is not an academic paper, some of the information I took straight from these sources without worrying about putting it into my own words. I am in no way trying to plagiarise and pass this off as my own work.

Doing A-OK

I had my first follow-up appointment with my GI surgeon yesterday. Since I’ve been feeling good, I was looking forward to the appointment. Even though I knew I was doing alright, it’s always nice to hear that from the doctor as well.

I told him that I was doing well and feeling normal again. I brought up some of my concerns about the joint pain and a couple of other issues I’d noticed. He told me that does raise some concerns, but to just keep an eye on it for now. He said it could just be my body adjusting to being off some of the meds, but to let them know if it continues or gets worse. So far, it hasn’t been too bad. I’ve been dealing with some mild joint pain, but it hasn’t been any worse over the past few days.

Other than that, the main thing we discussed was the possibility of future surgeries to reverse the ostomy and possibly put in a j-pouch. (I’ve included some information on this before, but here’s a link if you’d like to know more.) He told me again that it would be risky to do this surgery in the future, because even if things heal up, there’s always the possibility of the inflammation coming back if reconnected. I let him know that I wasn’t counting on that, in order to not get my hopes up. Plus, I’ve been told that the surgery can affect fertility and it’s recommended that you wait until after you have kids, so I was already looking at something several years in the future. We determined that there will likely be another surgery in the future, whether it’s to put in a j-pouch or otherwise to remove the rectum completely, because if left, it can increase cancer risks in the future. But regardless, either one would be after we’re done having kids.

But the doctor gave me a clean bill of health and the go-ahead to get back to life. I have a follow-up appointment set with my GI for a month from now and know to contact the surgeon if anything worrisome pops up. For now, it’s back to business as usual. Thank God!