Beyond frustrated

[Yuckypoo]

Back in the end of November/early December of 2023 I started having rectal bleeding. The bleeding I’m having is EVERY TIME I sit on the toilet, even without a BM, I have blood and clots from my rectum and have also been having what looks like clumps of tissue or mucus. I have also been having pain in the left side of my abdomen. It starts from around my sternum, goes across under my ribs and down the left side to my pelvis.

It is now early April. I have had bloodwork done, a colonoscopy with biopsies, an EGD with biopsies and a CT with contrast. I have been to my PCP (primary Dr), my regular GI, the ER, a colorectal surgeon and hematology. I have had to have an iron infusion as well. All the biopsies came back negative. The colorectal surgeon said I have some small hemorrhoids but they don’t appear to be bleeding. He said he thinks the bleeding is higher up due to the color and the clots. The colonoscopy showed ”mild proctitis” which my GI said could just be from doing the prep. She saw “a mild amount of gastritis in the antrum.” The CT showed “mild prominence of the bowel wall at the anal/rectal region, new from the study in 2017. Underlying mass can not be excluded.”

So far the only Dr to order/do anything has been my PCP. He at least ordered labs checking my iron further and gave me a script for hydrocortisone suppositories. I messaged my GI yesterday asking if we can check a stool sample directly, instead she just ordered a CBC! I have a message to my PCP out now about getting a stool sample done.

The only answer I’m really getting is ‘follow up in XX weeks/months’ and not actually doing anything about the bleeding. I have been bleeding now for going on 5 months!! HELP!! Any input is appreciated!

[Yuckypoo]

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[GCCA-Survivor Administrator]

Hi Yuckypoo,

Thanks for posting with us. 5 months without an answer is unacceptable. Your colorectal surgeon says it may be higher up. Did you get an endoscopy? At one point in what I’ve been through, I had a bleeding ulcer at the opening of my duodenum which is the first place leaving your stomach. My doctor said it was a “nasty ulcer.” There needs to be a definitive answer for the bleeding. It’s a symptom and it needs an accurate diagnosis.

Another option is to get a stool sample tested yourself. There are several options out there. Most can tell you if there is blood in the stool and some will tell you if there are any cancer cells in the sample. But bottom line, you need to know the cause of the bleeding so you can get on a path to being well and not having worry about it. Keep pursuing that. Perhaps getting a second opinion would be helpful?

We do wish you the best in finding answers. Keep after that definitive answer.

All the best and thank you,

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

[Yuckypoo in reply to GCCA-Survivor]

Thank you! i Just today was able to get my PCP to order a stool sample for multiple things. I had a colonoscopy Jan 30, CT Feb 6, saw the colorectal surgeon March 14, EGD March 27 and now waiting for my follow up with the surgeon on the 22nd of this month. They did check for blood when I went to the ER on 2/6 and that was positive. I’m going to call on Monday to schedule an appointment with a different GI for a second opinion. I’m also going Monday for another CBC and to get the things for the stool sample. I’m going to tell them to point me to the restroom and I’ll be back in a few with the samples!!

[Hidden]

By colonoscopy you mean the tool that visualises the whole colon and not sigmoidscope which visuals the first part!?. If ' higher up' is the small bowel a consideration/ any investigations there. Ive had iron deficiency for 10 Years but no real diagnosis to explain weight loss and pain apart from some diverticulitis and gastritis, despite 2 sets of scopes over a few Years. I also had a small bowel capsule camera for IDA but it could not find the bleeding. I just take iron tablets because the gastro people don't believe its gastro related in the GI tract.

[Yuckypoo in reply to Hidden]

Yes, the whole colon…

[GBP4L]

hello, may seem like a simple piece of advice. But have you tried taking Metamucil? I to have been bleeding since 2019. That has helped me a lot. When i get behind on my intake i begin to bleed. I too had everything you had done and was told i had slight hemorrhoids. I hope this helps. Please feel free to message me.

[Yuckypoo in reply to GBP4L]

I have. Unfortunately I have not found a fiber supplement that I’m able to tolerate. They all cause me to have severe stomach pain and bloating, even at low doses.

[GBP4L in reply to Yuckypoo]

How much are you taking? I take 3 spoons full daily. Don’t eat greasy food at all. Lots of water, like when you feel you’vehad enough drink another glass. Try intermittent fasting too. Keep me updated on your progress.

[Yuckypoo in reply to GBP4L]

I’ve tried everything from half the smallest dose up to 2x the recommended max dose, same thing no matter how much. I’m probably one of the most hydrated people I know! lol I drink a minimum of 2 liters of water, often more than that. I do intermittent fasting the majority of the time. I’m currently cutting down on dairy and most gluten. Also adding in more anti inflammatory foods. I’m working on some of the dietary changes gradually to make it easier for my mind and body to adjust to.

[Yuckypoo]

I’m definitely starting to do some research on different dietary changes to see how that works.

[GCCA-Survivor Administrator in reply to Yuckypoo]

Myself as well. I look for more fiber rich foods. I tolerate supplements, but I hear natural is best, but that’s tougher to accomplish. I make some good smoothies with veggies and fruit but it has to taste good, so I add beet powder for hydration and pineapple. I make in large batches and freeze.