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New member with lonely battle with IBS-C


galadriel45

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I am a new member and have reached for support.  I feel so lonely in the battle with IBS-C.  I have has IBS-C at some level for 25 years.  I am. 65. It started with occasional constipation, and I always found a food (like a high grain bread or cereal that could could control it. The severity would be up or down. Now I find myself in real trouble.

I have other issues that coincide with the IBS-C.  I had a gastric  bypass surgery in 1992.  Though it worked for the weight loss, I quickly developed a delayed gastric outlet problem.  Food will not empty out of my stomach.  And what can’t go down, has to come up.  I vomit 2-3 times a week.  Never less, often more. And yes this problem has been worked up medically and surgically and nothing can be done. My diet is very restrictive because of this.

I am also bipolar.  Depression and anxiety are my main manifestations.

So take me to 2021.   My husband died a horrendous death from esophageal cancer.  As you can imagine,  my anxiety and depression sky rocketed.  One year later I had a stroke.  It was at this point that my bowels just seemed to shut down, and I can no longer have a bowel movement without a laxative.

My doctor prescribed Miralax, Citracel, Colace, and Lactulose.   Citracel and Miralax are less effective because I cannot drink the required 8 ounces after a dose. Maybe 4 ounces on a good day.  Linzess helps a little but I can’t afford $300 a month. I will only let myself go for five days, then I take a laxative. I have gone as long as 13 days.  With all those drugs my stool is like wet cement, which I do not think my bowel can move along. The stool is never in the rectum, it seems to be in the transverse colon.

So here I am.   Clearly I have anxiety worrying about my next bowel movement.  I have started some guided meditation.  I have already gone through 9 months of CBT.  Yoga for constipation.  Acupressure.  Foodmod (which helps the bloating). Heat helps with the cramps.  Massage is helpful. Walking (don’t forget I have had a stroke, so that is harder than it seems.)  I am looking forward to reading the posts.

I know I need to work harder on the anxiety end. It took a long time to get to this place, and will take awhile to get out.  It feels good to write my story down.  Who wants to hear about your bowels?

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  • 2 weeks later...

hi there, thanks for sharing your story and im so sorry for all you have been through. i was diagnosed with ibs over 10 years ago around my early 20s..at first i had an odd ball like shape in my left side, stomach discomfort and later on issues with bowels...i think this was caused by stress and anxiety...i think stress mostly trigger my flare ups. i recently came back from a trip to an african country and was a bit skeptical but funny enough i was so relaxed and had no issues until a few days before returnin...not sure if its cause i was anxious of returning to my normal stressful daily life and wasnt looking forward to it or its something i ate or the antimalaria tablets/antibiotics. now im back at work and been getting cramps and nausea sigh 

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Jeffrey Roberts

Dear galadriel45,

I'm so sorry for the loss of your husband and for the great difficulty you have had medically along with your bowel difficulties. I was going to suggest getting access to the medication Domperidone, which is available in Canada, to help with emptying your stomach. I'm sure somewhere along the line doctors might have mentioned this. With your risk for perhaps having another stroke, I'm not sure Domperidone would be suitable. Certainly anxiety and stress adds to your ordeal, but it is not the cause of your gastrointestinal problems. Several other medications worth considering would be Motegrity and Ibsrella. They are very different than Linzess.

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I have tried Domperidone in the past.  It had side effects, the craziest is that I started to lactate!!!!  It used to be used to help women with lactation after birth, I am not sure it still is.  I am open to other newer drugs, but my health insurance isn’t.  I have to pay 50% of full price, which averages $300-500 a  month.  Yikes.

The doctor has me on so many drugs, that my stool is like wet cement.  No peristalsis is a going to move that and the cramping is terrible. So I have to use a laxative every week. I have been thinking and reading and need to take another look at this. I started the FOODMOP.  It immediately relieved most of the painful bloating.

Since anxiety is such a big issue, I have downloaded the app A Calm and Happy Gut.  It has meditation, affirmations, hypnosis, CBT, lots more. I really like it.  I have slowly stopped all the medications the doctor has given me.  It has been only a couple of weeks, but my IBS anxiety has improved.  I didn’t get my gut into this spot in a few weeks, so it won’t be a magical fix.  But meditation for anxiety is always a plus.  Oh, and yoga for constipation.

No “results” yet, but I am in much less discomfort.

Holidays are hard for widows like me.

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Jeffrey Roberts

Yes, domperidone is used off label for new Mom's to help with lactating. It's a rather bizarre medication.

I'm relieved to hear that looking into your FODMAP foods has helped to relieve some bloating,.

You might benefit from these FDA treatments to help with anxiety. Mahana IBS is cognitive behavioural therapy in an app and Regulora is hypnotherapy in an app. Both require a prescription from your doctor, but they are validated treatments for people with IBS.

I understand how difficult the holidays are when the loss of someone is greatly magnified. I'm truly sorry.

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  • 2 months later...
On 11/6/2023 at 1:01 PM, galadriel45 said:

I am a new member and have reached for support.  I feel so lonely in the battle with IBS-C.  I have has IBS-C at some level for 25 years.  I am. 65. It started with occasional constipation, and I always found a food (like a high grain bread or cereal that could could control it. The severity would be up or down. Now I find myself in real trouble.

I have other issues that coincide with the IBS-C.  I had a gastric  bypass surgery in 1992.  Though it worked for the weight loss, I quickly developed a delayed gastric outlet problem.  Food will not empty out of my stomach.  And what can’t go down, has to come up.  I vomit 2-3 times a week.  Never less, often more. And yes this problem has been worked up medically and surgically and nothing can be done. My diet is very restrictive because of this.

I am also bipolar.  Depression and anxiety are my main manifestations.

So take me to 2021.   My husband died a horrendous death from esophageal cancer.  As you can imagine,  my anxiety and depression sky rocketed.  One year later I had a stroke.  It was at this point that my bowels just seemed to shut down, and I can no longer have a bowel movement without a laxative.

My doctor prescribed Miralax, Citracel, Colace, and Lactulose.   Citracel and Miralax are less effective because I cannot drink the required 8 ounces after a dose. Maybe 4 ounces on a good day.  Linzess helps a little but I can’t afford $300 a month. I will only let myself go for five days, then I take a laxative. I have gone as long as 13 days.  With all those drugs my stool is like wet cement, which I do not think my bowel can move along. The stool is never in the rectum, it seems to be in the transverse colon.

So here I am.   Clearly I have anxiety worrying about my next bowel movement.  I have started some guided meditation.  I have already gone through 9 months of CBT.  Yoga for constipation.  Acupressure.  Foodmod (which helps the bloating). Heat helps with the cramps.  Massage is helpful. Walking (don’t forget I have had a stroke, so that is harder than it seems.)  I am looking forward to reading the posts.

I know I need to work harder on the anxiety end. It took a long time to get to this place, and will take awhile to get out.  It feels good to write my story down.  Who wants to hear about your bowels?

Take a look at "No More Heartburn in 30 Days" by Sherry A Rogers, MD. Don't let the title fool you, it's a great resource that covers the entire GI system. Then check her other books "Wellness Against All Odds", "The Cure Is In The Kitchen", and "Tired or Toxic?". They're all integrated with one another, since there's only so much info you can put into one book.

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Hi galadriel. I'm so sorry to read of the difficulty you are having with IBS. I strongly identify with your situation and also the feelings of loneliness and anxiety. 

You are certainly not alone in the suffering you are having, there are a lot of us. Just sending vibes of understanding and empathy and I hope you can find ways to get better. I keep living in hope myself and try as best I can to take any small wins, like managing to go somewhere I didn't think I was going to be able to. The anxiety aspect is very difficult too as you feel powerless to help yourself.  

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I only recently realized that I can  no longer travel, like for more than 5 days..  With my current regime, I haven’t lost hope.  But it was sobering to realize I cannot travel.

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Jeffrey Roberts
On 2/11/2024 at 11:07 AM, galadriel45 said:

I only recently realized that I can  no longer travel, like for more than 5 days..  With my current regime, I haven’t lost hope.  But it was sobering to realize I cannot travel.

My limitation is 7 days. After that my gut is completely unpredictable.

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