New diverticulitis patient

Posted by twosonmom @twosonmom, Sun, Sep 22 9:24am

I have been diagnosed at home for diverticulitis and my doctor has recommended surgery. Going to Mayo on the 3rd for second opinion. Any suggestions, information, or guidance would be appreciated especially regarding tests, length of stay, etc. Thank you!

I had to have surgery Jan 2018 for diverticulitis. The infection was so bad I had to have a temporary colostomy for 6 months. Was in the hospital 10 days. I was not at Mayo. Had it reversed July 2018 and while the reversal went well had complications w/ blockage in small bowel due to adhesions. Went home 17 days later on clear liquids and PICC line for TPN. Everything cleared about 3 weeks later, but in Nov, diverticulitis flared up again. Went to Mayo ER, sent home with antibiotics. 2 weeks later had to go back, in hospital for 6 days. Part of the sigmoid below reversal site was so blocked, they knew they would probably have to due surgery again. Went hone on Dec 20. Only clear liquids. I lost 17 pounds. Jan 2 had another test and blockage was even worse so back to surgery Jan 7, 2019. Ended up with Deloyers procedure and was in hospital for 6 days.
Feeling pretty good now , sometimes dealing with faster bowel transit time. This surgery was done at Mayo in Phx with a colo/rectal surgeon.
Some of my tests included CT scans, xrays, and the dreaded enema with contrast. I made them give me some pain meds when I was inpatient for that one. Naso gastric tubes are also in the realm of possibility. I have had to have them 4 times during this ordeal. They are unpleasant, but effective.
I would talk to your dr about the possibility of them having to do a colostomy and if they plan on reversing it.
Apparently, they cannot sew the bowel back together when it is really infected. Maybe they could treat and get the infection under control before they do the surgery, lowering your chances for a colostomy. I didn’t have that option at the time as my bowel was about to rupture.
Good luck!

REPLY

Hi @twosonmom I'd like to join @thull in welcoming you to Connect. That's great that you are seeking out all the information you can with this new diagnosis.

@harper7745 @elle1233 and @fourof5zs as they have all mentioned diverticulitis in the past and may be able to offer you support.

Here is another discussion "Diverticulitis? Diverticulosis? IBS? Muscle tear?" that you may find helpful: https://connect.mayoclinic.org/discussion/diverticulitis-diverticulosis-ibs-muscle-tear/

Back to you @twosonmom, what are your symptoms at this time? How did your doctor land on this diagnosis?

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@twosonmom It varies on how long of a stay. After you get an appointment they will set up any tests or procedures needed. The most mine have been is a 4 day period. Most of the time for me test and procedures.. such as blood test, imaging and endoscopy plus seeing the doctor are done over two days. I go to the Mayo in Jacksonville, so it could be a little different at the one you will go to. I am always in awe of how well the clinic and hospital are run.

My visit did not include diverticulitis diagnosis, but I imagine it will be at least blood work and imaging. if you have already had imaging done they will want a cd of the test and if you had blood work done those test results too.

Best of Luck,
ZeeGee

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@fourof5zs

@twosonmom It varies on how long of a stay. After you get an appointment they will set up any tests or procedures needed. The most mine have been is a 4 day period. Most of the time for me test and procedures.. such as blood test, imaging and endoscopy plus seeing the doctor are done over two days. I go to the Mayo in Jacksonville, so it could be a little different at the one you will go to. I am always in awe of how well the clinic and hospital are run.

My visit did not include diverticulitis diagnosis, but I imagine it will be at least blood work and imaging. if you have already had imaging done they will want a cd of the test and if you had blood work done those test results too.

Best of Luck,
ZeeGee

Jump to this post

I agree with @fourof5zs ,
I’m so impressed with how everything flows so well at Mayo- mine was Jacksonville too. I stayed at a hotel very near campus. You will get a detailed schedule of all tests and doctor visits.
Good luck!

Liked by thull, twosonmom

REPLY

@twosonmom You should either make an account at the Mayo web site or download their app. You get to see your test results through either one and doctor notes. You can fill out questionnaires through it.. your medical history and family medical history and other things. You can message your care team. When you go to the clinic they told me to leave my cell phone turned on so I can be reached about any schedule changes. Which I had a phone call about a change last time while talking with my NP.

ZeeGee

Liked by twosonmom

REPLY
@fourof5zs

@twosonmom It varies on how long of a stay. After you get an appointment they will set up any tests or procedures needed. The most mine have been is a 4 day period. Most of the time for me test and procedures.. such as blood test, imaging and endoscopy plus seeing the doctor are done over two days. I go to the Mayo in Jacksonville, so it could be a little different at the one you will go to. I am always in awe of how well the clinic and hospital are run.

My visit did not include diverticulitis diagnosis, but I imagine it will be at least blood work and imaging. if you have already had imaging done they will want a cd of the test and if you had blood work done those test results too.

Best of Luck,
ZeeGee

Jump to this post

Thank you so much!

REPLY
@astaingegerdm

I agree with @fourof5zs ,
I’m so impressed with how everything flows so well at Mayo- mine was Jacksonville too. I stayed at a hotel very near campus. You will get a detailed schedule of all tests and doctor visits.
Good luck!

Jump to this post

Thank you!

REPLY
@ethanmcconkey

Hi @twosonmom I'd like to join @thull in welcoming you to Connect. That's great that you are seeking out all the information you can with this new diagnosis.

@harper7745 @elle1233 and @fourof5zs as they have all mentioned diverticulitis in the past and may be able to offer you support.

Here is another discussion "Diverticulitis? Diverticulosis? IBS? Muscle tear?" that you may find helpful: https://connect.mayoclinic.org/discussion/diverticulitis-diverticulosis-ibs-muscle-tear/

Back to you @twosonmom, what are your symptoms at this time? How did your doctor land on this diagnosis?

Jump to this post

I have had diverticulitis several times with nasty pain on my left side. Last two months have been on antibiotics for 28 days. Still have ache, sharp pain at times, on left side and now on right. Pain comes and goes. I have also continued to lose weight. After I eat, the food seems to sit right under my bra line and causes bloating and hardness in my stomach. Nauseous several times a day. Now I’m trying to eat small amounts several times a day. Some days my entire colon aches and burns. I might also add that I have had digestive and colon issues my entire life. I will be 65 in December.

REPLY
@fourof5zs

@twosonmom You should either make an account at the Mayo web site or download their app. You get to see your test results through either one and doctor notes. You can fill out questionnaires through it.. your medical history and family medical history and other things. You can message your care team. When you go to the clinic they told me to leave my cell phone turned on so I can be reached about any schedule changes. Which I had a phone call about a change last time while talking with my NP.

ZeeGee

Jump to this post

I have an account set up. Thank you very much.

REPLY
@twosonmom

I have had diverticulitis several times with nasty pain on my left side. Last two months have been on antibiotics for 28 days. Still have ache, sharp pain at times, on left side and now on right. Pain comes and goes. I have also continued to lose weight. After I eat, the food seems to sit right under my bra line and causes bloating and hardness in my stomach. Nauseous several times a day. Now I’m trying to eat small amounts several times a day. Some days my entire colon aches and burns. I might also add that I have had digestive and colon issues my entire life. I will be 65 in December.

Jump to this post

Yes, my entire colon hurt the last time. Diverticulitis did not enter my mind because it started lower and then spread throughout my belly. Sharp, knifelike pains. I still have tenderness when my stomach get very gassy. I try to avoid gas producing foods. If I eat takeout sometimes there is more onion or garlic or smoke than I can handle. The time before it might be fine… different cooks. My other conditions are esophageal and stomach. I have had issues most of my life… starting out as a baby with formulas. I still don't do well with milk or soy products. I am 68.

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