Potential Problems After Surgery

Many people are concerned about the longevity of their jpouch. How long will it last?  What types of complications might potentially occur?  Here is a link to an excellent site that gives you really good in-depth and objective info on the Potential Problems Following J-Pouch Surgery

Image to the left shows the large intestine and rectum removed, the formation of the temporary ileostomy, and the jpouch.  The whole series of photos can be found by clicking on the following jpouch.org link.

Image via:  Jpouch.org

Interactive Tutorial on UC

This is a great Interactive Ulcerative Colitis Tutorial.  It is pretty basic info, but it is comprehensive and it is really easy to follow. Plus, there is a cool explanation how food goes through the digestive system. 

Info from Medline Plus.

 

Image via: Lifespan.org

Alternative Medicine for UC & Video

Video about Natural medicine for Crohn’s D.

A big question for many people with UC is whether or not to try alternative medicines.  There are so many avenues in which to talk about this topic, and I am NO expert, but for starters here is a good starter article from Mayo Clinic: Alternative Medicine for UC

My experience lasted for a year trying alternative medicines.  It was at year 4 of a very long flare (the one that lead to surgery), and I tried everything.

1) Acupuncture worked well to help me sleep, especially with UC where I was prone to getting little sleep from either getting up all the time or pred effects.

2) Aloe juice. I found that when I was in a more mild stage that aloe worked well for me. But I had to find the right aloe brand that would work. I would take it at night and it  seemed to lessen the inflammation for a little while so I could get a little sleep.

3) Probiotics – Did all the yogurt maker and the UC friendly yogurt.  Really labor intensive and no effects for me.

4) I worked with a Naturopath who focused on GI issues. He was able to do all the alterative tests, like bacterias and allergy that my western dr. wouldn’t try.  With him, I did a naturopath series of cleansing, I even did a liquid diet. Trying to slow my system down to try to lessen the inflammation then started slowly introducing foods. I lost tons of weight in this week and got really sick. This was a bad idea for me.

5) I tried many different pills, can’t recall all of them, oh yeah, Digestonol was $180 for 30 days of pills and that didn’t work and was really expensive.

6) During a 3 month time of trying to do natural, I also tried not working for 3 months and tried to relieve stress from my life to give my body time to relax and heal. This didn’t work.

7) I tried the SCDiet a few times, that just made me lose weight and was too hard to maintain, but mainly I couldn’t stand the weight loss.

8) Went to a visiting eastern medicine doctor for a private screening. He just wanted to sell me stuff, but his talk was really fascintating.

9) I had GOOD response to FISH OIL PILLS, andI would take those when I wasn’t on pred. and they seemed to help with the inflammation some.

10) I’ll let you know if there was more that was tried.  

If you’ve made it this far in this post, are you wondering, “Why did he try so much when it wasn’t working?”  The answer is simple: I had to know 100% for myself that if I choose the elective surgery, I didn’t want any future regrets.  Not everyone has to try as much as I did to know their colon is broken, but this was my process.   I still believe in alternative medicine and think that there is a great blend out there for UC western and alternative medicine options.   

Photo via: pazavi

UC surgery Decision to Make

Webcast of Why you shouldnt wait too long to have surgery for colitis? 

Hosted by HealthTalk.  Talks with Surgeon, Sonia Ramamoorthy, M.D. 

“Colitis and Surgery: Why You Shouldn’t Wait Too Long

Surgery for colitis can rid some people of the disease for life, but when is the best time to have it, and are the risks worth the benefits?

Join us as we speak with leading colitis specialists about when colitis surgery might work best to help you maintain an active, healthy life, and why waiting too long may be hazardous to your health. We’ll talk about the types of surgeries available, post-operative complications that may occur and the realities of living short or long-term with an ostomy. Plus, you’ll also learn about support groups, counseling and other ways to process emotional stress before and after colitis surgery. ” – (health talk website text)

*Around minute 14 the surgeon talks about being on steriods before surgery, Minute 26 talks about weening of pred. before surgery to improve wound healing.  High protein for good wound healing.  A good Attitude for mind over body.  when you understand the risks and benefits before you go into surgery you will feel empowered.  Getting your family ready for support. 

**Minute 20 talks about alternative medicines. 

**Minute 24 talks about possible risks of surgery.

**Minute 30 talks about lapro versus open surgery.  Talks about length of time recovery.

**Minute 33 talks about fertility (female).

**Minute 35 talks about ostomy.

**Min. 37 talks about living with jpouch, diet, BM function.

Do post your thoughts if you listen to the webcast!  Deciding to have the “elective” surgery was the hardest decision to make. My reason was because I was in a year 6 flare and no medicine working, pred. dependent, I just couldn’t live sick any longer.  I wish we had found information like this before I made my decision. This is a good webcast, they discuss the biggest reason people wait (people who are medicine dependent and still with symptoms they mean – not those on meds in remisison). Reasons people wait or delay their decision to have the “elective” surgery:

1) FEAR

2) Worry of surgery related complications

3) Surgery apprhension b/c live  with disease so long.

4) Risk of having ileo or colostomy.

5) People worry that it is the beginning of a slippery slope that will lead to more surgeries down the line.

6) Quality of life, childbearing fear, etc..

 

photo via: pyrogenic

Will I give my child Colitis?

Ohhh, this is excellent. How many of you have asked or been concerned if you were going to pass your IBD genes on to your child, you can listen to this radio webcast here, Genetic Research on Colitis.   “20 percent of people with colitis have a close relative with ulcerative colitis or Crohn’s disease.”  Click Video here.

Here are excerpts from the transcripts Will I give my child Colitis genetically?

 
“Rick:
Right. And hopefully avoid a lot of that trial and error process of treating it. Now, when was colitis first perceived to be a genetic disorder, Dr. Walters?

Dr. Walters:
That’s a good question, Rick, and it’s very interesting. If you speak to people who have been in the area for many years, they can often show you the slides of the talks they gave maybe 20 years ago which might have said, While we don’t know what causes it, we know it’s certainly not due to your genes. And then we started doing more research. And what was the research? The research was to try to understand why we got the disease, and it comes down to very sort of simple research called epidemiology. Epidemiology is all about studying who gets what, where and when.

Rick:
Yes.

Dr. Walters:
And it doesn’t sound like rocket science, but, you know, it’s the way that we understood genes. Because what did we discover? We discovered that if you had IBD the most likely thing we are going to know about you is that someone else in your family had IBD as well. And that was the first hint. We then started looking at twins thinking, well, if this really is something to do with your genes, then surely identical twins would have it more often. And what do you know? When we looked, identical twins had it much more often than nonidentical twins. And that was really the turning point.

The next huge turning point was when we suddenly were able to look directly at genes. Now, no one would have bothered spending the money if we hadn’t done the simple research first that said it’s going to be in the genes. We started looking, and in the early ‘90s we started getting genetic results saying, you know, you are right. There are differences in people’s genes which seem to occur in people with IBD compared to people without IBD. And that really is from about the early to mid 1990s”

Video: Probiotics

One of the big questions asked is whether or not to take probiotics.  And if you take them what brand, how much, etc?  Nice! A video that sheds some light on the mystery of probiotics:  Probiotic Video .  And on www.jpouch.org there is always a discussion running about probiotics here is a link to many probiotic threads on jpouch.org:   Probiotic Links

Video: What is UC?

Check this out, especially if you are newly diagnosed:  What is Ulcerative Colitis Video?  The video covers all the medicines and why these medicines are used etc…super informative.

Excellent Resource:  10 Key Questions about UC

Also, here is a good link to read more about what is UC:  Online Book about UC.

 

Image via: Lifespan.org

Excellent Video: UC to J-pouch

8 Days after surgery showing Ileostomy Bag

 

Video: UC to J-Pouch (well done & realistic)

I highly recommend this really done video (7 mins) about Video IBD Surgery:  ”People with inflammatory bowel disease often face surgery. New techniques can speed recovery and reduce post-operative discomfort. Meet an 18-year-old woman with ulcerative colitis, and follow along as she makes the decision to undergo laparoscopic surgery.”

I just felt this video really covered a lot of what I was going through trying to make the surgery decision and the surgery itself. 

My update: Almost 1 year has past, living healthy and well with my J-pouch (no longer have the temporary ileostomy).

Most FAQs: Elective Surgery?

One frequent question asked is if Mark’s surgery was elective?

Yes, Mark’s surgery was technically “optional.” He could have lived unfunctionally sick with his colon forever or he could have had the “optional” surgery.  A common question and one we asked is When did you know time for surgery? There are many posts out there like this one Jpouch vs Ileostomy and these help you feel not so alone in this journey.  Mark tells his story in this post: For those not forced into surgery, and Stories of surgery decision making . And although we get this question a lot, just because we sorta answer it here, you can feel free to write us at any time to talk about your decision process. For us making the decision took 3 years and was really, extremely difficult.   We have lots of experience offering our experience on making the decision, so use us as a resource if you need.  You don’t have to go through this decision alone, that was our mistake!

Here is a Video that is really well done that talks about making the decision for surgery, and her two step surgery is shown and discussed.  Technical and emotional are both addressed.  Really Recommend to Watch!

Crohn’s & UC Disease FILM

Wow.  We’ve just found this incredible film about CD and UC (mainly CD).  This film looks like something we need to get right away. Has anyone seen it yet? Watch film trailer here.

Crohn’s Disease
A very inspirational movie to those living with Crohn’s Disease or Colitis and has received attention from various medical authorizes nationwide (e.g. Crohn’s and Colitis Foundation of America).  http://www.trueguts.com