Diverticulosis/Diverticulitis, Anyone diagnosed?

[freeny]

I have recntly been dignosed with severe Diverticulosis-
http://www.healthatoz.com/healthatoz/Atoz/ency/diverticulosis_and_diverticulitis.jsp

I have had 7-10 episodes of Diverticulitis over the past 2-3 yaers but it was never diagnosed and passed after two or three days of discomfort. Two months ago I had an episode that hospitalized me for 10 days and the Diverticulitis was finally diagnosed.

Yesterday I went through a colonoscopy to see the extent of the damage this has caused my colon and the innitial news is not promising. One thing I know is there will be some surgery in my near future that will consist of the removal of part of my colon I have another test this Friday to find out how much.

Being so young (35) this has caused some alarm to my surgeon and he had requested for me to do the tests. It turns out that I have a twist in my colon which has caused occasional blockage which in result had put strain on a section of my colon causing the Diverticulosis.

I am searching fo any other people who have been diagnosed with this and their experience in the treatment, preferrably the "extreme" version.

Diverticulosis is apparently very common and by the age of 50 20-50% of all people will have this. by the age of 90 the ratio is almost 100%. Most people will never have a serious issue with this but some do as in my case.

Of course this news has freaked me out. I am not affraid of the surgery but instead afriad of what my life will be like post-op. I am expecting the worst and hoping for the best.

Best case scenario will be an invasive surgery to remove several inches, a month or two of recovery and then continue on my life relitively normally. worst case scenario can be found on the link provided above.

Experienced support will be helpfull.

 

[balamw]

I have been diagnosed and have suffered a number of bad episodes (2-3 a year) which have required antibiotics, no hospitalization however since I became aware of the precursor symptoms. I was originally mis-diagnosed with IBS, and even had my appendix removed 12 years ago when my symptoms were actually closer to a bad diverticulitis attack.

I have been much better off for about 18 months since I have almost entirely cut dairy out of my diet. I also avoid poppy seeds, strawberries, nuts and other foods that have hard to digest seeds.

B

 

[freeny]

I have been diagnosed and have suffered a number of bad episodes (2-3 a year) which have required antibiotics, no hospitalization however since I became aware of the precursor symptoms. I was originally mis-diagnosed with IBS, and even had my appendix removed 12 years ago when my symptoms were actually closer to a bad diverticulitis attack.

I have been much better off for about 18 months since I have almost entirely cut dairy out of my diet. I also avoid poppy seeds, strawberries, nuts and other foods that have hard to digest seeds.

B

How old are you and how old were you when you were diagnosed?

Also thank you for your response.

 

[MongoTheGeek]

It put my mom into a coma for a couple of months.

I was worried a couple of years later that that was what was wrong with me. turns out my problem was a 16cm tumor.

 

[freeny]

turns out my problem was a 16cm tumor.

Although your diagnosis is different, the procedure will be very similar. Could you share your experience? Please feel free to PM me if you wish to remain low key about it.

 

[sunfast]

freeny

very sorry to hear about your illness. I suffer from acute severe ulcerative colitis so I've had a few colonoscopies (no fun are they?) and also face the chance of surgery later in life.

Also, by trade I am a medical imaging scientist so if you have to undergo any investigations and have any questions feel free to pm/email etc.

Tim

 

[Lyle]

Yesterday I went through a colonoscopy to see the extent of the damage this has caused my colon and the innitial news is not promising. One thing I know is there will be some surgery in my near future that will consist of the removal of part of my colon I have another test this Friday to find out how much.

Being so young (35) this has caused some alarm to my surgeon and he had requested for me to do the tests. It turns out that I have a twist in my colon which has caused occasional blockage which in result had put strain on a section of my colon causing the Diverticulosis.

I am searching fo any other people who have been diagnosed with this and their experience in the treatment, preferrably the "extreme" version...

Best case scenario will be an invasive surgery to remove several inches, a month or two of recovery and then continue on my life relitively normally. worst case scenario can be found on the link provided above.

Experienced support will be helpfull.

I don't have Diverticulosis, but I do have Crohn's Disease, which, as it turns out, has a lot of the same symptoms and treatments. I had a resection of the terminal ileum (i.e. the lower portion of the small intestine) when I was 17 years old; the surgeon removed about a foot's worth of gut.

First things first: You're going to be fine. Seriously.

When I had my surgery, I was in the hospital about a few days in advance of the surgery (so that they could, ahem, "clean me out"), and then for about a week after in recovery. I spent several days in ICU, but on wonderful drugs. I remember being especially amused by the old Chuck Wagon dog food commercial, where the tiny covered wagon races out of the bag of dog food as the bewildered dog looks on. That commercial is hysterical when you're on morphine, but try not to laugh too hard or to sneeze during that time because it will really, really hurt.

Once you're home, the recovery from surgery will take awhile (a month or two sounds about right), but you're not going to be bedridden for all of that time. I had my surgery during the summer, so I didn't have to go right back to school, but if I recall correctly, I was able to get out and go to church within a week of being released from the hospital. There will be a period of time there where you're not allowed to drive, or do any heavy lifting or exercise, that kind of thing. It will be important for you to have some kind of support system at home to help out.

You will almost certainly need to modify your diet so that you don't anger your gut anymore. But you probably already know that.

Did I mention that you're going to fine? Because you will be. Hopefully, with this surgery you will put this behind you for good. Best of luck!

 

[yellow]

I don't have Diverticulosis, but I do have Crohn's Disease, which, as it turns out, has a lot of the same symptoms and treatments.

Same here. Currently struggling mightily with it (and loosing).

 

[freeny]

First things first: You're going to be fine. Seriously.

Thanks Lyle, That was exactly what I wanted to hear. Of course like I said, we dont know the extent of how much will be removed. Pardon the personal question but did you require a colostomy bag for any period of the recovery? Please feel free to answer this in a pm if you wish.

I am very versed in the "wonderfull drugs" after having my appendix removed a few years earlier. Morphine and Delauded if I remember correctly.

 

[balamw]

How old are you and how old were you when you were diagnosed?

I'm currently 38, and was (IMHO properly) diagnosed at 33.

I should add that my mom has it too and did ultimately she did have to have a section of colon removed.

As Lyle says, the first step is to stop eating the things your body can't handle. Even if that means going for extended periods of time on something bland like the BRAT (bananas, rice, applesauce, toast) diet. This is actually my first recourse now when I feel the beginnings of an attack coming on, and it seems to help.

B

 

[Dave00]

Sorry to hear about your illness, and hope you're at least feeling better. I see & treat diverticulosis and diverticulitis fairly often. Diverticulosis just means there's a little side trail off from the colon. From the inside, it can look like swiss cheese (if there's alot of them) and from the outside it looks something like a bunch of little fingers coming off the tube. It's generally not a problem unless it gets infected, which is diverticulitis. There is some evidence this is related to getting a seed or other food particle stuck, but this is controversial as cutting out the seeds doesn't always fix the problem.

Diverticulosis comes from an increase in the pressure inside the colon. If you think about it, if you increase the pressure, an area of weakness can develop in the wall and you get an outpouching. So, therapy is directed at decreasing the pressure. Most commonly pressure comes from harder stools or constipation, but it can come from unusual anatomy, as you've described.

A last resort, if conservative measures (stool softeners, losing weight, etc) have failed, is removing the affected part of the colon surgically. Some surgeons opt for earlier removal, especially in younger people, if the problem is unlikely to go away with more conservative treatment. The good news is, the surgery usually fixes the problem; the bad news is, no one likes to have surgery. If you go to an advanced academic center, they may even be able to do it laparoscopically - but, this would depend on exactly what portion is affected.

Good luck to you.

D. Sacco, MD

 

[Lyle]

Same here. Currently struggling mightily with [Crohn's Disease] (and losing).

I'm sending you a PM...

 

[balamw]

The good news is, the surgery usually fixes the problem

Odd that you put it that way. The two GIs I have seen have told me the opposite. Surgery only fixes the immediate problem, but for young people who are prone to it it tends to recur in another section of the colon. They have said, remove the underlying cause and you can avoid antibiotics/hospitalization and surgery. So far that seems to be the case for me. (Keeps fingers crossed).

Both specialists hav however confirmed your seeds comments, and I've had many discussions about this with my mom, but even though the evidence isn't firm, many of the seedy foods are already hard to digest, so consume in moderation.

B

 

[freeny]

I need to note that this isnt a normal Diverticulosis. This has been caused by an unusual bend and twist in my colon which in turn caused backup. the backup then caused the diverticulitus. In the surgery they will both need to address the bend/twist as well as the Diverticulosis.

Again, thank you all for being so very candid on a somewhat taboo topic (intestinal deseases). Although it has not been definately established (friday will tell) there is a possibility for the need of a colostomy bag and that hasnt settled with me very well as I'm sure you can understand. If anyone has had experience with this please share your experiences. As always you are free to PM me on this subject if it makes you more comfortable.

Jason

 

[Lyle]

Pardon the personal question but did you require a colostomy bag for any period of the recovery? Please feel free to answer this in a pm if you wish.

No, mine was never bad enough to require a colostomy or ileostomy. I wish I could give you some advice on that.

 

[Dave00]

Odd that you put it that way. The two GIs I have seen have told me the opposite. Surgery only fixes the immediate problem, but for young people who are prone to it it tends to recur in another section of the colon.

When you wrote this, I knew I had to research it again. My experience has been that surgery usually fixes the problem, but it's a mistake to rely on one's own experience because you're tainted by what you've seen. And I'm not a GI specialist.

The most up to date information I can find states that diverticulosis develops in the remaining colon in only about 15% of patients who have surgery. Of course, in your particular case there may be other factors that would make surgery less effective, which is why you should rely more on what your doctors say than anything coming from me.

Dave

 

[yellow]

No matter what happens freeny, good luck. GI problems are no fun at alland hard to explain to someone, because of it's taboo nature.

 

[freeny]

Of course, in your particular case there may be other factors that would make surgery less effective, which is why you should rely more on what your doctors say than anything coming from me.

Dave

Although I find the support of others with this afliction comforting, I am smart enough to know that I need to listen to my doctor and not an opinion on a message board. But your disclaimer is certainly welcomed.

BTW, Are you a doctor/surgeon/physician? What has been the most severe case you have treated. Im really looking for worst case scenarios and the treatments of so I may prepare myself for what is to come....

Thanks again.

I really wish all of you luck with your own personal battles.

 

[balamw]

I'm glad you followed up.

My experience has been ...

Well that's what makes us all human ain't it, our shared experiences and the ones that make us unique. I think it's always good to remember that even our MDs, specialists included, are human too.

Since I now believe that my appendectomy was most likely unnecessary, as my pain was in the lower left quadrant and they did not see the appendix as inflamed in the ultrasound, I personally tend to err on the side of avoiding surgery where possible.

Case in point to illustrate both points. My son developed trigger thumb at 2 and we took him to a hand specialist, friend and classmate of our pediatrician. His approach: schedule him for surgery next week, knock him out slice & dice as an outpatient in the adjacent hospital. He was 2 years out of med school and just establishing his practice, and thus eager to perform surgery. We called around and found another specialst 30 miles away who had more experience, particularly with kids. His approach was, we've got time, use it. Let's try a splint for 6-12 months and see if we can fix it without surgery, and if not we can still do the surgery.

We ended up having to do the surgery, but by that time our son had developed much more of an understanding of what was going on and what needed to happen to release his thumb, so it was much less scary for all of us.

freeny: Best of luck with your surgery and the recovery!

B

 

[MongoTheGeek]

Although your diagnosis is different, the procedure will be very similar. Could you share your experience? Please feel free to PM me if you wish to remain low key about it.

Actually no. My tumor was a secondary one not really hooked up to the plumbing so to speak. It was 3 months of really bad drugs.

 

[freeny]

Actually no. My tumor was a secondary one not really hooked up to the plumbing so to speak. It was 3 months of really bad drugs.

Sounds as if you were VERY lucky.

 

[bonnieboo]

Being so young (35) this has caused some alarm to my surgeon and he had requested for me to do the tests.

Just bumping this up as I am interested in an update. I hope all is well with you?

I am 36, and will soon be scheduled for surgery. I have been hospitalized for diverticulitis twice in the last eight months, and have had several other attacks that have not required hospitalization...the first I remember clearly when I was 33. The docs in the hospital this time around kept indicating there might be some sort of cause for this in one so young, but were cagey, and did not elaborate.

Does anyone here know what could cause diverticulitis in the young (aside from diet)? Mine is not unusually low in fiber)

Thanks...b

 

[freeny]

Just bumping this up as I am interested in an update. I hope all is well with you?

I have seen several "specialists" about this as well as the fantastic experience of having both a colonoscopy and barium enema. My Diverticulosis is contained within about a 4 inch part of my sigmoid colon. I have only been hospitolized once and that was a 10 day stay on some serious antibiotics. Since then (Feb '06) I have had one attack that was painfull but did not produce a fever which kept me from being admiited. I have a stash of cipro for such occasions. I am also 36 and began having attacks around the same age as you. The doctors cant tell me either why I am having this at such a young age, it could just be genetics for all we know.... Every doctor I have seen cant explain it either (about 6 or 7)

Any how, my surgeons plan is this- As long as I dont have any attacks that require hospitalization I will continue treat attacks with the cipro. If I need hospitalization they will treat me and release me. Aprox six weeks later I will go in for surgery to remove the 4 inches of my sigmoid colon laproscopicly. 5 days in the hospital, two weeks recovery at home and within six months I will be fully "cured" and may never have another attack again.

Its a scary thing at first but after research and getting several opinions I have come to accept the reality that I will most likely have to go under some day and deal with this, but have found that it is very treatable and wont change much of anything except for a scar and a few months out of my life.

I wish you the best in your surgery. Let me know how it goes.
You are not alone....

I PM'd you my personal email account if you wish to contact me.

 

[iGary]

Good luck, Freeny.

I'm lucky enough not to have the severe problems of Crohns, Colitis or your issues, but I do have Irritable Bowel Syndrome, so I can understand the anxiousness of coping with a pissed off colon. It's no fun.

And people who have not been through it cannot possibly understand what taking a dump and it feeling like someone ripping your insides out must be like.

Sorry, it's not pleasant, but neither are these diseases.

Good luck, buddy.

 

[letsgorangers]

my dad had colon cancer 22 years ago (and has been cancer free since the surgery!), and was diagnosed with diverticulitis a few years back. certain things aggravate it; usually things like nuts for him. anything that can turn into small sharp pieces that get stuck in the intestines will cause pain. anyway, the bouts of it suck, but he's alright. bottom line -- you'll be alright! just stay positive.