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AMY5556's Photo AMY5556 SparkPoints: (8,835)
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3/26/13 6:56 A

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Sometimes I wonder if the doctors themselves dont know what to do with the disease. After I got out of the hospital they said regular diet. When I was in the hospital they had me on dilated for pain which my pharmacy brother said they only use that for cancer patients. When I went home they gave me nothing, no antibiotics nothing. It hurts to eat anything. Fruit is not so bad. Im going to try to drink water every hour and try to flush it out which will also help with my kidney stone. I also take metamusil once or twice a day which also helps temporarily with the pain. If I am really in pain I take some pain reliever but that is not good for my liver since I have fatty liver disease also..lol. Pretty face..lol but my body is a mess..lol.

One thing good. I was having a terrible time losing weight..when the relapse started I started losing weight again which I have to lose for my liver problem.

Edited by: AMY5556 at: 3/26/2013 (07:00)

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3/24/13 6:24 P

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I found out when I had my colonoscopy too, but the doc didn't say I had to stay away from anything, or tell me anything to do, and I asked. The girl in the office told me he said I didn't have to do anything, so figure it wasn't much to worry about, but, sometimes, when I eat walnuts or pistachio nuts, I will get a pain in the stomach, but not always, depends on how often I eat them. As for gas, did you ever try CVS Antacid liquid max strength, it works, it has same ingredients as Malox, which is off the market. I am one who will get acid from Jello, if I eat too much, sauce, coffee, fruit, fruit juices, etc. I found Bigelow Organic tea and it seems to not bother me.

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LEXIE63's Photo LEXIE63 SparkPoints: (53,841)
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10/16/12 3:01 A

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Interesting! Thanks for that. :-) One of my friend's aunts used to not eat for a day, and just drink a ton of tea, and nibble on ginger. Then she would eat bland food for a couple of days - apple sauce, dry toast, that kind of thing, before getting back to a normal diet.

I've found that when I get a flare-up, I feel sick, and for the next day or so, everything I try to eat makes me feel sick, so I don't eat much anyway. I have invested in shortbread biscuits that have stem ginger pieces in them, to nibble to see if that helps. I figured ginger biscuits used to help me when I was suffering from morning sickness, so it may help with this too. :-)

Edited by: LEXIE63 at: 10/16/2012 (06:01)
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10/15/12 8:31 P

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For me, a home remedy is anything that will get my system moving again. A big bowl of peanuts or extra strong, black coffee.

This last time I took a maximum dose of a laxative. Sometimes, just relaxing in a bathtub helps.

Fiber Choice is the OTC fiber pills I take.

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10/15/12 3:24 P

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This is a good example of a major difference with diverticular triggers. My body processes my intake as a rule in 24 hours or less. If anything I am too loose, and processing too fast for my bod to get enough iron especially from the food I eat, AND I love my veggies, and eat a reasonable amount of them, though I do have my low veggie days, I'll admit. :-)

Just adds to the difficulties with advice from the medical profession I guess. There doesn't seem to be 'one advice fits all' in this case.

Makes it all the harder for us, I guess.

Incidentally, you mentioned 'home remedies' to get over your flare-up. Care to share in case it may help us?
Hugs,
Lex xxx

Edited by: LEXIE63 at: 10/15/2012 (15:25)
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10/15/12 12:37 P

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I was diagnosed maybe 3-4 years ago during a routine colonoscopy. Maybe longer ago then that. I too was told to eat my fiber, not to strain when I do go and to not get constipated. Well, sorry, my system moves soo slowly, constipation is a regular thing for me!

I've never had a fever when I've had problems so I've never been on antiboitics for it. I just realize that I'm achey, crampy, tender, can't pass gas & haven't had a bowel movement in quite a while. I get so bloated my pants won't fit & I look like I'm pregnant!

Then I start thinking about what I've been eating, or more precisely, what I haven't been eating, which is usually not fruits & veggies. This last time I toughed it out to the weekend & took a laxative. I'm also trying to eat more fruits & veggies. I'm also taking an OTC fiber pill. I was sometimes taking 1, I've upped it to 2. I'm going to take 3. Maximum doseage is 5.

As long as I stay regular, I'm okay. Even if regular for me is 2 or 3 times a week.

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10/15/12 12:00 P

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You're very welcome. :-) I also had two lots of antibiotics within a couple of weeks the first time this hit me badly enough. Curiously, I also thought I had appendicitis! LOL

I was told that the jury was still out on the seeds etc thing as well. Logically, though, to me and also to my nutritionist friend at any rate, if something is small enough to block an entrance hole of a diverticula, then it could conceivably do so, and so I think it is better to be safe than sorry.

Also, I don't know if you have ever noticed this yourself, but I know that certain food items - most notably raisins, nut chunks, and sweetcorn in my case - come out the other end in much the same shape as they went in (sorry, but there is no room for polite conversation with this disease, LOL), so they could potentially scratch your system or whatever as they travel through. And if they are intact when they exit, then your body isn't getting much nutrition from them anyway, so it won't miss them, and may even work easier without having to force them through your system. That is my take on it anyway. :-)

Hopefully you will manage to find a balance for your system soon. I don't know who we have on this team that has been dealing with this for a long time, but hopefully they may have some help to offer us too. Maybe even some good news for the future. :-) I've only been diagnosed for three months, so still very much experimenting and researching the disease.

Hugs,
Lex xxx

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10/15/12 11:35 A

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Thanks so much for your thoughtful reply! I had NO IDEA some foods could trigger it, what was explained to me in the ER and by my doctor was somewhat different and ended with "get lots of fiber" and that was the end of that - no mention of food triggers. They said that previously, nuts, seeds, etc were removed from the diet for those who suffered, but now that there's no scientific basis for that so I didn't need to avoid them!

Sigh. To say I'm discouraged is putting it mildly. Doc restarted me on antibiotics today to head off any infection, since it's only been two weeks since the original outbreak, he's worried I never got rid of the infection fully and now it's coming back.

Again, thanks for your thoughts, I'll take any info I can get!

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10/15/12 11:19 A

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Hi there,

Firstly, I'm sorry to hear you are in pain. I'm currently sitting here with a dull ache in my lower left side after eating a small snack, so know what you are dealing with. :-)

Secondly, from what I've learned from my doctor, from a friend who is a qualified nutritionist and who has three sufferers in her family, and from my own research, it isn't as simple as eating more fibre, though a high fibre diet will certainly help. I wish it was that simple!
emoticon
Thirdly, the medical profession are somewhat in the dark as to what causes the problems in each individual, because different people have different triggers. Even among medical professionals, there are disagreements, and some have a lot more advice to offer than others.

Many things can be triggers for a flare-up, from stress, to potato skins.

Some doctors think that certain items in your diet can hurt your system as they are processed through the intestines, by maybe scratching it, or blocking the diverticula, which causes faeces to rot, thus causing the pain and infection.

I've been advised not to eat seeds, nuts (unless smooth peanut butter), sweetcorn (unless creamed), dried raisins and sultanas (unless thoroughly soaked, or cooked in a casserole)and certain skins, such as baked potato skins (although new potato skin may be ok).

You also need to remember that there are two types of fibre - soluble and insoluble. Soluble fibre is helpful but insoluble fibre can actually cause symptoms, so should be kept to a minimum. To minimise insoluble fibre intake, try avoiding corn (maize) bran, wheat bran, and (annoyingly) some fruit and vegetables.

As some of these things will affect you, but others you will be fine with, the only way to work it out is probably to eliminate everything that may be a trigger, and then gradually reintroduce them one at a time, and see if you get any symptoms.

It is, if you will pardon the pun, a royal pain, and despite your best efforts, you will probably still get flare ups from time to time, but hopefully they will happen less often if you work at figuring what acts as triggers for you.

Oh, and you may find eating smaller meals helps - which may be a boost to your calorie counting. :-) Gotta find silver linings in this situation somewhere. I try and eat small breakfasts, lunches and dinners, with snacks in between. Again, it takes a little adjusting (I think they call it grazing), but it has its health benefits apparently, in addition to hopefully helping your system cope with the diverticular disease.

What I will do is type up the information my doctor and my nutritionist friend gave me, and share it on this group, so that we can use it as a guide.

Anyone who has advice they can add, such as things they find helpful to get over a flare-up for instance, can be added to that thread once I start it. Let's see if we can really get a good collection of info together to help us all. :-)

Hugs,
Lex xxx

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Women are angels and when someone breaks our wings we simply continue to fly...on a broomstick. We are flexible like that. :-)


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10/15/12 8:46 A

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Well, I'm here...I'm in pain ...and you have my full attention. emoticon

I was diagnosed with a CT (they thought I had appendicitis, that's when this came up) the last week of September. Did a round of Cipro/Flagyl and got better for a week.

And yesterday, I could feel it. The cramping constant ache. Not to the fever/chills stage I was when I went to the ER, but like it was when it first started.

After the ER visit and diagnosis, I saw my doctor who said "increase your fiber intake" That was the sum total of the advice. So, I did it. I started watching my diet and adding fruits and veggies. Realized it was a long road to getting to 25-35 gm of fiber a day for me....but I have worked on it all the last week very diligently....and now I'm in pain again.

Help. I'm miserable and I don't know what to do. I'm thinking of going to a different doctor, simply because I feel really uninformed about what to do for myself. I've read a lot online, but it all says the same things, the things I'm doing now - adding fiber.

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10/11/12 5:41 P

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When I first joined there was some activity but not a lot, now there is even less.It's down to almost nothing. I saw your email, so hopefully that will spark some interest. I did reply to it.

What about some goals such as fitness, how much fiber, or fruit/veggies eaten or how much water drank?

Some getting to know you conversations,

I'm just tossing ideas out there.

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10/11/12 3:47 A

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Apparently so. The team wasn't active when I joined, which is why I volunteered to be a team leader. I'd like to get it moving again, but can only do that if the team members get involved.
If you have any ideas as to what you'd like to see in this team, let me know. We can have some challenges and activities set up.

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10/10/12 6:15 P

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Are we the only 2 here?

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10/10/12 2:56 A

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Suffering from that myself at the moment. *sigh* I do hate being bunged up.

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10/9/12 7:34 P

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I haven't found any food that triggers it. It's a lack of fiber that causes my problems. My system simply stops moving.

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10/9/12 4:09 A

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It can't be easy if you struggle to eat fruit and/or veg. Fortunately for me, I love my freggies, specially the veg, but when I was younger, in fact up until a couple of years ago, I ate white everything - pasta, bread, rice. Had no idea what I was heading for at the time. Had I known...

When I joined Sparkpeople I gradually started changing my habits, and switched to wholemeal bread, but I was still eating white rice and pasta until I was diagnosed. The few times I ate brown rice in the past, it was horrible. Turned out it just wasn't cooked for long enough. I discovered easycook brown rice recently, and as long as it boils for about 30 mins, it is actually quite tasty.

I also use wholewheat pasta now. As long as the sauce I top it with has plenty of flavour I can handle it. :-)

But it seems that no matter how careful you are, things can suddenly kick off and the excrutiating pain is almost unbearable. I feel so sick during an attack, and I don't mind admitting that the pain can make me cry during the crescendos.

Trying to eat small portions of food several times a day, rather than main meals seems to help me, and I am in the process of cutting out seeds, nuts and skins where possible, to try and avoid food that can catch in the diverticular and cause blockages.

To put it bluntly, if it is likely to come back out in a similar state to the way it went in, I have found it is best avoided - sweetcorn, sultanas, tomato seeds (most seeds, actually), pepper skins, and nuts seem particularly bothersome in that department for me, though I am still experimenting at the moment.

I'm trying to avoid fibre supplements if I can, but if things don't settle, I'll give them a try. I find the Spark nutrition tracker really helpful and have added fibre to the collection of things I check for.

Of course, it doesn't help that different foods are triggers for different people. It really is a case of trial and error to find out what works for you and what doesn't. It can sometimes be quite tricky to figure out what exactly it was that got you doubled over in pain.

Do you find that?
Hugs,
Lex xxx

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10/8/12 7:13 P

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I really think that what causes my problem is what I'm NOT eating, specifically fiber. My system has always been on the slow, I mean really slow side. About the time I realized that I was headed for trouble it was too late, I was there. The only thing that helps is getting my system moving again.

So, I've increased the fiber pills I take and am concentrating on eating fiberous foods & more fruits & veggies. And I'm not a fruit & veggie person!

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10/7/12 5:11 A

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So sorry I didn't get to you sooner. I hope you are ok now. Trying to find what causes the problem so you can fix it is really difficult isn't it?

I only got diagnosed a couple of months ago, and am struggling to find out what causes flare-ups and what doesn't.

See my latest blog for my musings after a bad attack last night:

www.sparkpeople.com/mypage_public_jo
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Hugs,
Lex xxx

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9/29/12 11:10 P

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Last week I wasn't feeling well. Finally realized it was my diverticulosis. Did my home remedies and got through it. I had issues again a couple of days ago. Nothing like the week before.

I just can't get my system to be regular!

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