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Surgery may be approaching.

FM Former Member
Well, I've been having a lot of issues trying to raise my iron levels in my body. I've gone through 18 weeks of iron infusions and can't get my levels up past 10. My GI threw a battery of tests at me to try and see where the culprit may be. I've recently done an endoscopy/colonooscopy, a prometheus test again to rule out chrons, and a cat scan to check my small intestine. For my colonoscopy results, there is just a small 4 inch section on my left side that is riddled with large pseudopolyps. The rest of my colon is perfect including my rectum. There was some increased mucosa at my ileum which is why he wanted to check again about chrons. The pseudopolyps can't even be removed they are so big and there are A LOT of them. After my scopes, this was the first time my GI mentioned the word surgery to me. I meet with him on Wednesday to go over all of the pathology results and options moving forward. During my cat scan, they also discovered some sort of lesion on one of my kidneys. We did an ultrasound which didn't help so I'm going for an MRI later in the week. It's very hard for me to even think about surgery because I feel completely fine. Pretty normal BM's, no urgency and no cramps at all. My main issue is not getting my iron up so I get very winded quickly. I believe he's also worried about cancer risk with all the polyps due to not being able to determine the difference between normal polyps and the pseudo ones...there's that many in that small section of my colon. I know my sis had the J Pouch surgery 20 years ago and she's been fine ever since. She's telling me to go ahead and just do it and get it over with but it's extremely difficult to pull that trigger. I'm sure my GI will suggest that I go meet with the surgeon...funny enough, it's the same surgeon that did my sisters J Pouch 20 years ago. Stay tuned...
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Jan DollarJan DollarModerator, RN, retired
You did not mention seeing a hematologist to get to the bottom of the anemia. That is a lot of iron infusion without much of an impact! One thing that crosses my mind is the often overlooked anemia of chronic disease. This is where there is no issue of bleeding or malabsorption. The issue is the presence of chronic disease suppresses the bone marrow, so that inadequate amounts of blood cells are made. It is almost like aplastic anemia without the bone marrow destruction. The cure? Get rid of the disease.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001591/

That is probably why there is the discussion of surgery. You say you are fine...but what's this about being out of breath and having to have numerous iron infusions? Is that really fine? Probably more true that you are just used to how you feel and are afraid of the unknown, a natural way to feel I think.

But, you need to be sure it is the colon and not your kidney before going forward!

Jan Smiler
FM Former Member
I have been seeing a Hematologist for a couple years...they're the ones administering the iron infusions. When I say I feel fine I'm referring to my UC in general...no diarrhea, no cramping, virtually no passing of blood at all...bathroom maybe once a day or once every two days, no urgency. My doc didn't see anything that showed any kind of bad inflammation in my colon during my scope. I do get winded easily due to my anemia which is why I stay away from cardio and stick with weights which I can tolerate. He did find a bit of Gastritis in my stomach and a thickening of the mucosa in my stomach as well. He has mentioned that we may do the camera pill next to check my small intestine again. I'll be getting the MRI this week for my kidney to see what that exactly is. He mentioned that more than likely it's going to be a cyst but needs to be checked.
TE MarieTE MarieMember
I thought you were talking about having FAP until you mentioned UC. This may sound weird but can they just go in and remove the 4 inches and a bit on each side of it? When people have cancer surgeries they cut it out and reattach it up and no j-pouch is necessary.

Do they ever do this on UC people Jan? They just take sections out when needed for Crohns right?

Boynton Beach is one place we are considering spending January 2013, for our winter vacation. It's interesting that I noticed your post Smiler
mgmt10mgmt10Member
You can have a normal hemoglobin level but still be low in iron in your blood. I have been dealing with anemia for a long time now and just recently finished a series of iron infusions. When I started my hemoglobin was 8.0 and my ferritin level was a non-existent 4. It should be 150 to 200. Now after 8 infusions my hemoglobin is 12...pretty normal but my ferritin is only 54.

I have a sister too that had j pouch surgery 20 years ago and has done great with her j pouch. She bugged me for years just to go for it and get it over with. I should have listened to her much sooner!
FM Former Member
here's my updates from today. All my pathology came back as non cancerous. They had sent it to Johns Hopkins for a second analysis. The section of my colon starting at 30cm to 50cm in is what my doctor feels that's what's causing my iron issues. He said there are way too many polyps to biopsy. There is one issue and I can't remember the name of the test (short name starts with a P) but that level is high. Think it has to do with how much I'm bleeding in my intestines. He's going to use my situation as a case study when he presents next week at a GI convention...interesting. He's sending me for a second opinion on my colitis to the University of Miami. The only time I can get in is near the end of November but tomorrow he's also having me to for a surgical consultation at the Cleveland Clinic down here. I'm also going for a prometheus test to see the effectiveness of my 6MP to see if he can raise the levels of the drug or not. I have my MRI scheduled for my lesion next Wednesday.
FM Former Member
I met with the surgeon today at the Cleveland Clinic. I felt like a lab rat as I was in a small exam room and he came in with 4 other surgeons all sporting clip boards. He was extremely thorough with his questioning. He has asked me to get ALL recent pathology results, stool test results and would also like the actual glass pathology slides so his team can look at them. He's not convinced yet that I just have UC based on a few observations. He still feels it's possible for me to have chron's or chron's-colitis. Because I have such a specific section that's inflamed and the rest of my colon is perfect including my rectum, that is one indication that has him questioning things. He said its very rare in UC that the rectum is spared inflammation like mine currently is. It has been inflamed in the past though. He also wants to get the pathology and surgery report from when I had my partial fistulotomy which is also usually common in chron's disease as well. He would like me to do the camera pill to check my small intestine as the next step. If he feels it's chron's colitis he has no problem sectioning out the heavily polyped section of my colon which is causing my iron issues. If I have strictly UC he won't even consider removing a section. That's where I stand now
Jan DollarJan DollarModerator, RN, retired
Sounds like a good plan. Rectal sparing is indeed rare in UC, unless you have been using rectal medications. But, since you have had rectal inflammation in the past, you don't truly have rectal sparing.

Still, if possible, it would be good to know Crohn's vs UC. They used to do partial colectomies for UC in the past, and even ileorectal anastomosis in some, but it rarely turns out well, and you wind up coming back for more surgery later.

Jan Smiler

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