Managing Colostomy and Fibromyalgia Together: Seeking Advice

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winter.41.girl
Jun 06, 2025 12:14 pm

Hi everyone, hope you are all having the best day you can.

I have had my colostomy for 4 years following treatment for colorectal cancer and have been plodding along okay, or so I thought. Over the last 12 to 18 months, the fatigue and pain levels had been gradually building again until I realized that I felt the same way as when I was having radiation therapy. Blood tests and GP visits have resulted in a diagnosis of fibromyalgia, probably triggered by the trauma of dealing with recurrent cancer.
I'm trying to get my head around how best to manage both conditions alongside each other and wonder whether anyone has been through the same and can offer advice and any tips?

Many, many thanks x

Mimipark
Jun 06, 2025 12:25 pm

Hello. I hope that you are finding some sunshine in your day.

While I have not had cancer, I have fibro since 1998. Over the years, and after trying many medications, I have gone with behavior modification. The medications seemed to make things worse for me, and one doctor told me that because of my fibro, my body does not process medications (especially those that affect your serotonin) the way it should. My daily pain level has remained at about a 5/6, and I've just become so used to it now. On days when I am very tired or just don't feel "good," I rest. I only do what is absolutely necessary, and sometimes it's just sitting and reading or watching TV, knitting, and very rarely napping. For the first 10 years, I did take different supplements, so check with your doctor to see if you might benefit from certain vitamins, minerals, or herbs. One thing I was told to stay away from was phosphates. So I don't drink Pepsi anymore, or any dark soda, and I rarely treat myself to a Sprite or Ginger Ale anymore. Try increasing your water intake to 64 ounces or more. I can usually tell when I haven't had enough water as I begin to not feel so good.

Your body and mind have had quite the trauma; perhaps some meditation, yoga, or even gentle exercise may help you to feel better.

I have only had my colostomy for 8 weeks now, and that was quite a mental blow for me, but I just try to do better than the day before, and when I'm having a bad day, well... I'm having a bad day, but I try not to let it last the whole day.

I am sure there are others here that will be of help. This is a wonderful group.

IGGIE
Jun 06, 2025 12:51 pm

I wish you both a much better life and hope that someone here can be of help. Some people here think they are having a bad day with a leak as if it is the end of the world, but you guys are on a different level. Good luck and sending good vibes your way.

Regards, IGGIE

SusanT
Jun 06, 2025 4:40 pm

I don't have fibromyalgia, but I did have cancer. I'm so sorry you have this after all you've been through with cancer.

I find that I feel better when I stay away from highly processed foods. I don't know if that will help you or not.

TerryLT
Jun 06, 2025 9:13 pm

Hi there, Sorry to hear about your troubles. I'm glad you found this group, as there are bound to be others here who can relate to fibromyalgia. I'm just curious, is there an actual blood test now to diagnose this? I don't think that was the case several years ago.

Terry

 

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winter.41.girl
Jun 06, 2025 9:42 pm

Hi Terry, no blood test can diagnose; just tests to rule out other potential causes of the symptoms, like thyroid problems. Unfortunately, life is never that easy.

Rachael

SusanT
Jun 08, 2025 3:28 am

Do you have an elevated ANA titer with fibromyalgia? For some reason, I thought you did. While not a diagnostic test, it could be part of a bigger picture.

bowsprit
Jun 10, 2025 5:57 pm

From all accounts, that can be a beast of an ailment. Somebody who has it said that stem cell therapy helped her. It was performed by the local branch of an American company that specializes in such treatments specifically for fibromyalgia. Hopefully, stem cell treatment may be of help to you as well. All the best wishes.

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