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Old 10-30-2006, 10:54 AM   #1
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1longcoolwoman HB User
Diverticulitis every couple of months!

Hi all...My name is Cyn and I am 47 years old....I am new to this site and have spent a little time reading some of the posts, especially about diverticulitis. I have had bowel issues for over 10 years now, but went from one diverticulum to over 100 diverticula just in the sigmoid area in a matter of 3 years. Can anyone tell me how this could even be remotely possible? The only thing I have done different from the time my GI doc found one until now, is I have had several sigmoidoscopies and have had 2 colonoscopies since 2000. I used to only suffer with a diverticulitis attack roughly twice a year, but now I can't seem to stay well more than a month at a time. I have been hospitalized 3 times over the past year due to either becoming allergic to so many antibiotics that can be used, or the ones I can use, just stopped working. I became allergic to Cipro and could never tolerate Flagil. Has anyone else had a reaction to Flagil? Within 30 minutes of taking it, I am running a high fever and have terrible muscle aches. It makes me feel like I am deathly ill with the flu! I would like to know if anyone else has ever had this type of reaction. My doctor looks at me as if I am nuts when I explain how it makes me feel. Anyway, I have been told over and over that I need a resection done but I am terrified that something will go wrong. I know that after having such a bad year, my back is pretty much against the wall. If any of you have had resections and have any words of wisdom to offer, please respond. Also, I wanted to add that when I start feeling, colicky, which is one of the first symptoms I seem to get when I am getting sick with diverticulitis, I do a water enema. Sometimes this seems to calm or get the attack under control and it goes away. I don't know if this makes any sense of if something else is going on when I feel this way,(maybe IBS with the diverticulitis?) but I do notice some improvement when I do the clear water enemas. Has anyone else had any experience in using enemas to help? I used to use oral "Fleet" to clean the bowel and it seemed to cut down on some of the pain caused by having to move my bowels while in an attack. It has been a year and a half since my last colonoscopy and I know I will have to have another one before my resection is performed but I am so afraid that having these scopes is what is causing so many out pouchings to begin with. Also, I am worried that something else may be going on that is being missed. CancerDad, you seem to know so much about issues with the bowels, any comments on all that I have written? Sorry everyone that this is so lengthy. I feel I could write a book about this!!! I am so sick of being sick......I have suffered with diverticulitis for over 6 years, and this year has just about taken it's toll on me. If anyone has any suggestions, or comments, please write. I have just about gotten enough nerve to phone a surgeon. One last thing. I noticed that someone named Harry posted about using water soluble fiber to ward off attacks....Anyone? Thanks all....Cyn

 
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Old 10-30-2006, 02:22 PM   #2
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Re: Diverticulitis every couple of months!

Cyn, I really don't think the scope exams would bring on additional diverticuli. My guess is that it was just the timing - were you getting the exams because of some symptoms? If so, the situation might have been developing.

Generally, when attacks become more frequent is when most people decide to have a resection. It's scary, but it will take care of the situation. But have you changed eating habits at all? If not, most likely diverticuli will start to develop again.

My feeling is that, while enemas may provide temporary relief to some symptoms, they are not such a good idea in the long run. I have never heard any professional opinion on the matter, though. Using Fleet with any regularity is definitely not a good idea. It is much better to clean the system out by eating more fiber-rich foods.

 
Old 10-30-2006, 03:59 PM   #3
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Re: Diverticulitis every couple of months!

Hi, Cyn I had a colon resection about 2 1/2 years ago and didn't even have as many tics as you describe you have. I know that the surgery is scary and something that shouldn't be taken lightly since it is considered to be major abdominal surgery, however, the advantages in having the surgery far outweigh the disadvantages. I too had developed an allergy to the Cipro and the Flagyl was a med that often affected my ability to concentrate or drive while on it. The infections increased to the point of landing me in the hospital for 4-5 days and I was told that with each infection my chances of having a perforation significantly increased. I was also told that this disease runs much more aggressively in anybody under the age of 50.

So I had the surgery and have been symptom free ever since. I can now eat everything I want including foods with nuts and seeds and popcorn as well!! What convinced me that I had made the right decision was when a friend of my husbands ended up in the ICU after he had perforated. He had emergency surgery which left him with a temoorary colostony and he also lost his spleen because of the infection spreading to it. The infection went into his bloodstream as well and the doctors told us that he was lucky to be alive. He spent a month in the ICU and had to have a second surgery to reconnect his colon and remove the colostomy.

It is an elective surgery but one that can truly save you life. As for me I would do it all over again knowing how good I feel now as before having a resection.

I wish you well and if you have any more questions feeel free to ask.

(((HUGS))) ~ Goody

 
Old 10-30-2006, 10:41 PM   #4
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1longcoolwoman HB User
Re: Diverticulitis every couple of months!

Hi Goody........
Wow! That's great!!! I am so happy that everything went well with your surgery and that you are feeling disease free! I love a happy ending! Thanks so much for the advice...I agree with you, I need to get it done. I just keep putting it off because I keep hoping I will be able to manage it without surgical intervention and of course, I am afraid something will go wrong and I will end up dying, or end up with a bag for the rest of my life. I just haven't had good luck where doctors are concerned. My last hospital stay was about 5 days, and not only did one of my nurses hang the man across the halls IV on my line, but the doctor that admitted me, prescribed Flagyl the last day I was there. The nurse walked in with the cup of meds and some water. I knew better than not to ask, so I did. I was sooooo upset when she told me what she was holding! I couldn't believe it! My allergies were all over my chart and he and I had even talked about them! I told her I wanted to see him right then. She came back and said he had forgotten and that he changed it. Can you believe this??? He never spent more than 2 minutes with me. I loved the hospital but the care left so much to be desired. Every visit I have had this year (in 2 different hospitals) have had issue after issue like this. Is it any wonder I am gun shy? Anyway, those are just two examples of many incidences of the incompetence I have dealt with. I was thrilled to read that you have been able to go back to eating anything you want! How much of your colon did they have to remove? I am going to have to have about half of mine removed. The disease is even in the right side now, but most are in the sigmoid, descending, and about half of the transverse is affected. I don't know if I will ever be able to eat the things I used to enjoy again, like popcorn (which is the one thing I miss the most!) and tomatoes etc. When you became allergic to Cipro and Flagyl, what did they start prescribing for your attacks? I have been using Augmentin 875 but the last few hospital admissions were because it failed to work. Right now I am taking it along with Clindamycin. I have been on it for about 9 days and I am still having some cramping and mucus. I may end up back in the hospital this time but am keeping my fingers crossed here. I wish I had all of this behind me. How did you decide on a surgeon? Did you go with a general surgeon or did you go with a colorectal surgeon? Also will you please advise me on what to do and not to do, regarding preparing for surgery, and what to expect and what you felt was the worst part of the process for you? Thanks again for getting back to me.....Your post lifted my spirits this evening........Cyn

 
Old 10-30-2006, 10:58 PM   #5
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1longcoolwoman HB User
Re: Diverticulitis every couple of months!

Hey Auntjudyg,
Thanks for answering my post.....I usually use clear water enemas.....but do use an oral form of Fleet when I feel an attack coming on. I know my back is against the wall here...I am just trying to find the courage to go through with this. It seems that the attacks are brought on mostly if things start to slow down. If I don't (go) EVERY day, I get into trouble. I've noticed that eating things like candy, (which draws water from the bowel, which in turn can make for dryer, harder stools), gets me into trouble. Sometimes I can skirt by, but most of the time, I pay the price. Of course eating seeds for me is out of the question. I have given up the idea of ever enjoying popcorn again. But that's a small price to pay to ward off attacks. I am trying to figure out a good source of fiber to use. Other than natural sources, vegetables and fruits, which one would you recommend? This quack of a doctor I saw my last admission, wanted me to take ducolax every day for a stool softener...Do you agree with this advice?..I haven't done that but did take one yesterday. What do you suggest? Like anyone else, there are times I don't get the veggies and fruits in and need to supplement the fiber somehow.....Thanks for all your advice! It is truly appreciated! Cyn

 
Old 10-31-2006, 07:37 PM   #6
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gomer4 HB User
Re: Diverticulitis every couple of months!

Hey Cyn!
I had a bowel resection almost 7 months ago due to diverticulosis. I had about a foot of the sigmoid part of the colon removed. The surgeon said it was like a lead pipe due to all the infections I had had in that area.
I never knew when I was going to have a flare up. The fear of it perforating and having to have a bag was what got me on that operating room table!
I remember watching the doctor stand and look at the CT scans---thinking......"am I actually going to go through with this????"

I did! I have never regretted it. I would feel so sick when I would get an infection. I have not been sick from that since. I do drink a fiber supplement type drink every morning. I have lost 67 pounds (not related to the surgery) and feel great!
I had suffered with diverticulosis for 5+ years. I am 43 now.
Any questions...........holler. I do know what you are feeling. I was scared and found tons of help/support here. So many have gone through the same thing, and have such good advice.

Lori

Last edited by gomer4; 10-31-2006 at 07:38 PM.

 
Old 10-31-2006, 11:40 PM   #7
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1longcoolwoman HB User
Re: Diverticulitis every couple of months!

Hey Lori....Congratulations on getting your life back and the weight loss!!! That is incredible! I hope I will be as fortunate. I guess it all depends on how good of a surgeon I end up with. Did you go with a general or colorectal surgeon? A lot of folks say that it's something that a general surgeon can handle....but I would think that a colorectal surgeon would definitely have more experience in that area. I am going to try to wait until after the holidays but that all depends on whether or not I can get this current attack under control. I have been on antibiotics for 10 days and I am still having issues....I have been having attacks for 6 years now...I went from 2 a year to every 6 weeks....UGH! It is such a blessing to have this site to come to and to have folks like you take the time to write, even after you're well. Thanks so much for that! I wish I already had this behind me! You were so young to have had so many attacks. That's what I kept hearing from each doctor. I bet you heard the same thing. I am REALLY trying to prepare for this mentally. Every time I am in an attack I get so mad at myself for not having already taken care of it! I have just been so scared due to so many medical errors during my hospitalizations.....Was your surgery, post op pain and recovery what you expected? Also what kind of fiber drink do you use and did you always go on a liquid diet during your attacks? It seems if I continue to eat even a little, my attacks last longer! Thank you so much for writing Lori!

 
Old 11-01-2006, 08:25 PM   #8
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Re: Diverticulitis every couple of months!

Cyn.............
My doctor was a general surgeon, I believe (bad me for now being sure!)
But, he was the surgeon on call the night my diverticulitis actually blocked the colon. It was the sickest I had ever felt in an attack, and the first time I actually vomited during an attack. But, he was the first doctor to actually come up with a plan. The colo-rectal surgeon who did my last colonoscopy told me I had "extensive diverticulosis", said something about talking about my diet, and I never saw him again. I saw his nurse at the follow-up.
So.....I went on my merry way after that colonoscopy, continued to have flare ups, kept going to the ER to get on antibiotics, and praying for the best. My mother kept saying......"You need to have this taken care of!"
But, I just couldn't seem to get focused on what exactly I needed to do. Then.......the worst attack yet..........surgeon with a plan..........and the rest is history.

During an attack, I couldn't eat, because I felt so sick, and usually I was constipated and that made me feel like I couldn't eat too. As a general rule, I did avoid all the anti-diverticulitis foods on a regular basis, but would still get infections. I could never point to exactly what started it up.

Looking back, the surgery, and post op stuff went probably like I expected it to. One problem I had was I slept so poorly in the hospital. I would wake up feeling like I had been through a battle. And my doctor didn't want me sleeping all day in bed. He wanted me up! The more you move around, the faster your bowels will wake up and start working, I think.
Everyone kept asking about passing gas. That is a big thing apparently!

My weight loss is not from the surgery. I just decided that it was a good starting place, since I didn't eat for a week.

I drink Konsyl every morning. This really helps me stay regular. I am also taking acidolophisis.

I really hope you can find a resolution to this problem. I just didn't want to live wondering when it would explode. Any other questions.......holler!!

Lori

 
Old 11-04-2006, 05:07 AM   #9
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pippa84 HB User
Re: Diverticulitis every couple of months!

I have been having a bout with diverticulitis now for about 3 1/2 months, non stop. I have been only on Cipro, the doctor has neven even tried to change the antibiotic. But, the most effective thing they have given me is an antispasmodic. That has made me more comfortable and I am feeling alot better, but still have tenderness in the left side. He has now told me to back off on fiber, and has given me a laxative to use. This this only the second time I have had this. The first time, was over 5 years ago and 10 days of antibiotics cleared it up. This time, I had upper GI problems, terrible gas and heartburn along with it. I ask him about hospitalization and IV antibiotics, when it didn't clear up like before. He said that is only done in the very beginning, that I had been on antibiotics and had a concentration of them in my system and IV antibioitcs wouldn't help. He has mentioned surgery right from the beginning and it bothered me that he was so anxious to talk surgery. It has occured to me that if one antibiotic didn't clear it up, perhaps he should have tried another. I was sure that he would try the IV antibiotics, but he didn't. I am just wondering if I am getting the best care and chance to avoid surgery?

I acutally went to the emergecy room and they did a CAT scan, and told me that I didn't have diverticulitis, and they didn't know what was causing all the pain. I go to the specialist and he says that I do have diverticulitis. I am looking for treatments or meds that people may have been given that maybe my doctor isn't doing, that I should try before I make the surgery decision?

Lois

 
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