NETs, Toilet Paper, a rant and a little humor

Posted by Angie T @terryabk, Mar 28, 2020

NET, the TP crisis, a rant and a little humor

I’m sure the irony of the TP “shortage” is not lost on most of us. As someone who experiences way too many BMs each day, and frequent diarrhea, (sorry for the TMI) my household keeps a lot of the precious paper on hand. I’m sure in this community, I’m not alone in this. I see online posts and comments complaining about shoppers purchasing more than a couple packages at a time. Large TP purchases are our normal. I’m not condoning hoarding, purchasing carts-full at a time, but please, there are some of us that honestly require an abnormal amount of bog roll.

When reports of TP shortages first began, I made a contingency plan, just in case. We have plenty of rags, old towels, etc., which I could cut into wash cloth size and utilize as an alternative. A good rinse after use, toss into a bucket and launder every day or so. Great plan, or so I thought.

A few days into our sheltering in place, my good, OLD, reliable washing machine died. So, here I am, high risk, trying to stay home and I need a washer. I’m trying to shop for one online, but finding it difficult. I REALLY want to SEE what I’m buying. Laundry is an essential chore, but I have serious lung issues and am already on supplemental oxygen. Laundromats are not an option right now. My daughter comes to the rescue though and offers drop off laundry services at her home. She’s working from home now and can throw in our loads while she’s working. What a huge help. I haven’t asked her yet if she’s willing to wash our reusable butt wipes.

How are you dealing with this health crisis? Staying calm? Freaking out? Looking to humor? Praying a lot more. All of the above?

@hopeful33250

@terryabk Hello Angie

I was thinking about you. When you last posted you were having a lot of symptoms. How you are feeling now? Have you been able to get a second opinion?

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Thank you for checking in. I’ve still been having symptoms. I’m staying open to the possibility of seeing someone at Mayo. However, add another wrench to the story. June 23 I had emergency gall bladder surgery. Im really hoping some of my symptoms were actually from my gall bladder. I’ve had constant GI distress since Friday when my system started working again, but have been assured this is normal for about a month following gall bladder removal. However, what they can’t tell me is going forward from one month, what I might expect with no gall bladder given my history. I’m scheduled for post-op surgeon visit 7/6, an MRI in July to check the common duct for blockage (an ERCP was scheduled after my surgery, but later deemed not necessary), an EDG in July to check Barrett’s Esophagus status and to see if NET has regrown in Fundus and tattoo the area for possible future surgery. I see my oncologist in early August. My body apparently likes to cause drama and stress.

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Hello @terryabk

I'm appreciative that you posted an update. I am sorry to hear of your emergency gallbladder surgery. I had my gallbladder removed during one my of carcinoid surgeries so I'm never sure if what I experienced after the surgery was a result of the gallbladder removal or a combination of the removal as well as the more invasive carcinoid surgery of the duodenal bulb. I really understand what you mean about a body that likes drama!

I would encourage you to read (and post if you want to) in other discussions about post-gallbladder surgery problems. It might offer you a realistic perspective as to what to expect during the next few weeks or months. You do need to give your digestive tract some time to adjust to the missing gallbladder.

Here are the links for those discussions:
https://connect.mayoclinic.org/discussion/nausea-pain-and-headaches-after-gallbladder-laparoscopic-surgery/
https://connect.mayoclinic.org/discussion/gallbladder-surgery/
Was your surgery done laparoscopically or was it an open surgery?

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@hopeful33250

Hello @terryabk

I'm appreciative that you posted an update. I am sorry to hear of your emergency gallbladder surgery. I had my gallbladder removed during one my of carcinoid surgeries so I'm never sure if what I experienced after the surgery was a result of the gallbladder removal or a combination of the removal as well as the more invasive carcinoid surgery of the duodenal bulb. I really understand what you mean about a body that likes drama!

I would encourage you to read (and post if you want to) in other discussions about post-gallbladder surgery problems. It might offer you a realistic perspective as to what to expect during the next few weeks or months. You do need to give your digestive tract some time to adjust to the missing gallbladder.

Here are the links for those discussions:
https://connect.mayoclinic.org/discussion/nausea-pain-and-headaches-after-gallbladder-laparoscopic-surgery/
https://connect.mayoclinic.org/discussion/gallbladder-surgery/
Was your surgery done laparoscopically or was it an open surgery?

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Thank you for the link. Luckily it was laparoscopic surgery. My abdomen was so inflamed the surgery took > 1.5 hours (estimated 45-60 minutes), because surgeon had trouble getting gall bladder out. I’m grateful she stuck with it, I’d much rather deal with extra bruising and swelling than a traditional incision. I’m healing quite quickly, so I can’t complain.

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@terryabk

Thank you for the link. Luckily it was laparoscopic surgery. My abdomen was so inflamed the surgery took > 1.5 hours (estimated 45-60 minutes), because surgeon had trouble getting gall bladder out. I’m grateful she stuck with it, I’d much rather deal with extra bruising and swelling than a traditional incision. I’m healing quite quickly, so I can’t complain.

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@terryabk Keep in touch. Will you post again and let me know how you are recovering?

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@terryabk

Thank you for the link. Luckily it was laparoscopic surgery. My abdomen was so inflamed the surgery took > 1.5 hours (estimated 45-60 minutes), because surgeon had trouble getting gall bladder out. I’m grateful she stuck with it, I’d much rather deal with extra bruising and swelling than a traditional incision. I’m healing quite quickly, so I can’t complain.

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Hello @terryabk

I was wondering how your recovery from gall bladder surgery is coming along. I hope you are feeling better. Will you post when you have a moment?

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@hopeful33250

Hello @terryabk

I was wondering how your recovery from gall bladder surgery is coming along. I hope you are feeling better. Will you post when you have a moment?

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Thank you for asking. I’m doing very well. Apparently my gallbladder was in very rough shape, so bad that it fell into the “gangrenous” category, yikes. Thankfully that’s all behind me. My GI issues are somewhat better now that my body is adjusting to no gallbladder. I’m thinking some of my pre-surgery issues could have been related to the gallbladder. I’m supposed to have an EGD this month to check the Barrett’s Esophagus and to see if the NET in my stomach has regrown. Also supposed to have an ERCT this month to check my bile ducts (related to gallbladder surgery). Guess I’m going to have to call and check on those since I haven’t heard anything. Especially since I think I’ll need a COVID test before the procedures; results here in St Louis are taking 7-10 days unless they do a rapid test at the hospital. Life is like an unending roller coaster ride! Stay healthy and safe.

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@terryabk

Thank you for asking. I’m doing very well. Apparently my gallbladder was in very rough shape, so bad that it fell into the “gangrenous” category, yikes. Thankfully that’s all behind me. My GI issues are somewhat better now that my body is adjusting to no gallbladder. I’m thinking some of my pre-surgery issues could have been related to the gallbladder. I’m supposed to have an EGD this month to check the Barrett’s Esophagus and to see if the NET in my stomach has regrown. Also supposed to have an ERCT this month to check my bile ducts (related to gallbladder surgery). Guess I’m going to have to call and check on those since I haven’t heard anything. Especially since I think I’ll need a COVID test before the procedures; results here in St Louis are taking 7-10 days unless they do a rapid test at the hospital. Life is like an unending roller coaster ride! Stay healthy and safe.

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@terryabk I so appreciate the update, Angie. Glad to hear that you are adjusting to life without a gallbladder! I hope that the rest of your tests go well. I'll check in with you, later on, to see how you are doing. Keep up your good spirits!

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@hopeful33250

@terryabk I so appreciate the update, Angie. Glad to hear that you are adjusting to life without a gallbladder! I hope that the rest of your tests go well. I'll check in with you, later on, to see how you are doing. Keep up your good spirits!

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My scope went well! No signs of new tumors, no new esophagus damage. Stomach was very full of bile, which is making my GI issues worse. MRI scheduled for September to check bile ducts, but they’re probably fine judging by the bile in my stomach. Doc is starting me on Cholestryramine to try to counter act this issue. Not thrilled about yet another medication, but if it works and I can leave the house or even go to my downstairs sewing area without worrying about mad dashes to the bathroom, it’ll be worth it. It isn’t the most pleasant stuff to take, but isn’t the worst either.
Is anyone else taking this? Has it helped?

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@terryabk

My scope went well! No signs of new tumors, no new esophagus damage. Stomach was very full of bile, which is making my GI issues worse. MRI scheduled for September to check bile ducts, but they’re probably fine judging by the bile in my stomach. Doc is starting me on Cholestryramine to try to counter act this issue. Not thrilled about yet another medication, but if it works and I can leave the house or even go to my downstairs sewing area without worrying about mad dashes to the bathroom, it’ll be worth it. It isn’t the most pleasant stuff to take, but isn’t the worst either.
Is anyone else taking this? Has it helped?

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@terryabk
Hi Angie,
Thanks for the update. I'm glad to hear there are no more tumors nor esophagus damage! That is good news. I do hope the Cholestryrmaine works for you. While I've never taken it let's see if any of our members in the NETs group might be familiar with this med.

Do any of you have experience taking the med, Cholestryrmaine? @amyh2439 @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @lorettanebraska @wordnoid @trouble @nigelvw @tomewilson @upblueeyes @jls77 @tfrancis @ronregency @lamunford @michellewalsh @coolwino @sherryboynton @klpetts @1943 @amandafl @andre1221 @19611ventura @terryabk @mgreene @tsabe2 @trixie1313 @ronregency @124124eva @megansims @gtassithomas @remi @sbcook70 @feebee

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@hopeful33250

@terryabk
Hi Angie,
Thanks for the update. I'm glad to hear there are no more tumors nor esophagus damage! That is good news. I do hope the Cholestryrmaine works for you. While I've never taken it let's see if any of our members in the NETs group might be familiar with this med.

Do any of you have experience taking the med, Cholestryrmaine? @amyh2439 @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @lorettanebraska @wordnoid @trouble @nigelvw @tomewilson @upblueeyes @jls77 @tfrancis @ronregency @lamunford @michellewalsh @coolwino @sherryboynton @klpetts @1943 @amandafl @andre1221 @19611ventura @terryabk @mgreene @tsabe2 @trixie1313 @ronregency @124124eva @megansims @gtassithomas @remi @sbcook70 @feebee

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For me prescribed for diarrhea and digestion didn’t work and had no side effects with it. I still have digestion problem Creon didn’t help too My GI prescribed breathing test waiting for the results

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Hello @terryabk,
I just noticed in another discussion group that @astaingegerdm has used the med, Cholestryrmaine, and I would like to invite her to this discussion as well so that she could share her experience.

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@terryabk – Hi Angie- I took Cholestyramine to try to stop severe diarrhea I was having. Some years earlier I had my gallbladder removed. It did not work for me because my diarrhea turned out to be caused by something else. I did not have any side effects from it.

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