Diverticulitis. Oh my, any suggestions?

Photo queen

Good evening to everyone continuing the fight of this miserable disease.  I have not been on for awhile as the last few months have been very difficult but I always get great encouragement from positive reports from others that are hanging in there. No one really knows what it is like except for you ladies on this site.  I am 3C diagnosed in dec. 2011.  I have been thru all the standard treatments, debulking surgery, carbo/taxol 6 rounds, Doxil and Avastin 6 rounds, tried desenitation in hospital for 2 rounds (allergic to carbo) that all most killed me and now I am on topotecan. Everything was going fairly well until we went to the beach and I ate Carmel popcorn.  Downhill ever since.  First ever bout of diverticulitis in July, they just gave me pills, said not to serious, sent me home.  In august it returned.  They think they might have never got rid of it the first time.  This time 5 days in the hospital plus 11 days of Iv therapy at home with ertapenem. Next time they say bowel removal.  Needless to say my onc wants me back on chemo as soon as possible but I'm concerned with constipation issues and laxatives.  have an appointment with gastro guy on Thursday looking for advice.  Counts have not been too bad. 22 to 41 but any abdominal infection will cause counts to double.  Has anyone else had problems with this and found anything that helped?  I still often run a low grade fever of about 99 most evenings which they feel is inflamation not infection.  Onc says not unusual for cancer patients.  Again, anyone else have this going on?  any input from my teal sisters would be greatly appreciated.  Thank you!

Kaleena

Diverticulitis

Hello Photo Queen:

I am sorry you are having so much trouble.    I don't know how I can help, but I can tell you that I have had episodes of severe adominal pains until I vomit.  I would get these every several months or so.  I would also get the mild fevers (99).   I started eating healthy and thought that was causing it.    I knew I did have diverticultis from years past.   After my most recent PET scan last week, it indicates that I have Sigmoid Diverticulosis without acute diverticulitis (no idea what that means since I haven't met with the doctor yet).

Anyway, how is your vitiman D levels?    I had mine check several months ago and it was low - a 14.   They started me on 50,000 units two times a week for five weeks and then once a week until I finished the script.   The vitamin D does control inflammation and it did take most of my pain away (lower back, etc).   I haven't had an abdominal attack since the first week of June.

In the meantime, I have been drinking a lot of water and cut back on caffeine.   I eat greek yogurt with granola in the morning and try to eat fruits and vegetables.   I was told if I get an attack again, that I should go while I am in pain and have an xray to rule out a partial blockage.

Since it seems they are indicating inflammation, why not get your Vitamin D levels check?

My best to you in resolving this issue for you.

Kathy

Photo queen

Kaleena said:

Diverticulitis

Hello Photo Queen:

I am sorry you are having so much trouble.    I don't know how I can help, but I can tell you that I have had episodes of severe adominal pains until I vomit.  I would get these every several months or so.  I would also get the mild fevers (99).   I started eating healthy and thought that was causing it.    I knew I did have diverticultis from years past.   After my most recent PET scan last week, it indicates that I have Sigmoid Diverticulosis without acute diverticulitis (no idea what that means since I haven't met with the doctor yet).

Anyway, how is your vitiman D levels?    I had mine check several months ago and it was low - a 14.   They started me on 50,000 units two times a week for five weeks and then once a week until I finished the script.   The vitamin D does control inflammation and it did take most of my pain away (lower back, etc).   I haven't had an abdominal attack since the first week of June.

In the meantime, I have been drinking a lot of water and cut back on caffeine.   I eat greek yogurt with granola in the morning and try to eat fruits and vegetables.   I was told if I get an attack again, that I should go while I am in pain and have an xray to rule out a partial blockage.

Since it seems they are indicating inflammation, why not get your Vitamin D levels check?

My best to you in resolving this issue for you.

Kathy

Diverticulitis

Thank you so much for your reply. Have an appointment with my doctor on Monday and I will definitely have those vitamin d levels checked.   The oncologist office does not seem to be concerned about the low grade fevers but they sure are annoying To me.  They keep saying inflammation not infection so it just maybe the answer.  Thanks again!

Kaleena

Photo queen said:

Diverticulitis

Thank you so much for your reply. Have an appointment with my doctor on Monday and I will definitely have those vitamin d levels checked.   The oncologist office does not seem to be concerned about the low grade fevers but they sure are annoying To me.  They keep saying inflammation not infection so it just maybe the answer.  Thanks again!

Appointment

Hi PHoto Queen:

How did you appointment go?   Did you find anything out?   Hope all is well.

Kathy

Photo queen

Kaleena said:

Appointment

Hi PHoto Queen:

How did you appointment go?   Did you find anything out?   Hope all is well.

Kathy

Vitamin D

Hi Kaleena!  I did get my vitamin D levels checked last week and found out that they are indeed low at 15.  The family doctor told me to start taking 2,000 Units a day for now.  Based on the amount they gave you I'm not sure that is enough but I think he just wants to see how i'll tolerate it.  Went back on chemo this week and now taking miralax everyday with the vitamin D.  So far so good.  Thanks for checking in.  It truly is a day by day challenge to stay positive, but it really helps to talk to others on this site who have experienced like problems.  Thanks

lovesanimals

Photo queen said:

Vitamin D

Hi Kaleena!  I did get my vitamin D levels checked last week and found out that they are indeed low at 15.  The family doctor told me to start taking 2,000 Units a day for now.  Based on the amount they gave you I'm not sure that is enough but I think he just wants to see how i'll tolerate it.  Went back on chemo this week and now taking miralax everyday with the vitamin D.  So far so good.  Thanks for checking in.  It truly is a day by day challenge to stay positive, but it really helps to talk to others on this site who have experienced like problems.  Thanks

Hi Photo queen

So glad to hear that things are going good so far.  Sending lots of positive thoughts and energy your way.

Kelly

Kaleena

Photo queen said:

Vitamin D

Hi Kaleena!  I did get my vitamin D levels checked last week and found out that they are indeed low at 15.  The family doctor told me to start taking 2,000 Units a day for now.  Based on the amount they gave you I'm not sure that is enough but I think he just wants to see how i'll tolerate it.  Went back on chemo this week and now taking miralax everyday with the vitamin D.  So far so good.  Thanks for checking in.  It truly is a day by day challenge to stay positive, but it really helps to talk to others on this site who have experienced like problems.  Thanks

Positively thinking

Photo queen:

I am glad you found out about your Vitamin D.   I never even knew to ask about it but someone else on this site had suggested it and when I got a new doctor he also suggested I have it done.   I hope that the vitamin D will help ease your pain.   Maybe the dose they gave you (since you are taking it daily) is based on the fact that you are back on chemo and this way you can have it in your body daily.

How long do you have to be on chemo?   Stay positive.   Oh, by the way, don't you kinda feel in control when you suggest something (like checking vitamin D levels)?   Having a say in your treatment definitely makes you feel in control instaead of just going along without question with whatever is suggested.    Sending more positive thoughts your way!

Kathy