Proctitis intro/IBS/iron complications..NOW ULCERS?! Enemas cause it or iron?!

Hello, I'm new here but vigorously reading. I'm female, 43, live near beach and work out and eat healthy. Therefore, I was very shocked to need iron infusions in October due to severely low iron. After getting iron, literally 24 hours later I felt like my left side colon locked up! It was extremely painful and I couldn't go for over a week. When I finally did, it was strained and painful!! Felt like I tore something. Then bright red blood which got worse. I've been diagnosed w IBS and mild hemmerroids in my twenties so I thought it aggravated that. But nothing helped. Six weeks later a colonoscopy revealed a 1.5 inch area of ulcerative proctitis localized at the end. He said very mild. Biopsy simply showed inflammation. I have had flares before of IBS but my last colonoscopy three years ago showed nothing so no ulcers or inflammation then😒. I'm wondering if the iron just tore me up? I'm doubting I have UC. I've never had most of the symptoms. Any thoughts ?

Also, embarasssing but... I used saline enemas for three years once a week for IBS constipation. Could this have caused proctitis?!

Thanks in advance!!!

Post Edited (Savannah6) : 12/26/2016 11:08:35 PM (GMT-7)

Blaming yourself for getting ulcerative colitis isn't helpful. It's unlikely that your action or inaction caused it.

"I'm wondering if the iron just tore me up?" Nope, very unlikely. It's coincidence.

"I'm doubting I have UC. I've never had most of the symptoms. Any thoughts ?" You have Ulcerative Proctitis and it's not helpful to be in denial about it. UP is for life and requires care and adherence to a lifelong treatment plan for best results. Ignore your UP and it'll flare badly with a vengeance.

"Also, embarasssing but... I used saline enemas for three years once a week for IBS constipation. Could this have caused proctitis?!" Nope, very unlikely. Ulcerative Colitis is likely an immune deficiency. So likely we're born with a genetic mutation that makes our bodies less capable of fending off bad bacteria within the large intestine. Over time, our bacteria within the large intestine gets way out of balance, less diversity, bad outnumbers the good, and bad bacteria (MAP or something) make it through our mucosa defenses. Our immune system responds but cannot win, yet keeps attacking endlessly causing inflammation, bleeding, diarrhea, pain, etc. It's got to be something like that although the exact process isn't certain.

Thank you for your responses and I appreciate your insight. The doctor said that I have 0 to 5 cm of ulcerative proctitis. I am doubting it because I've never had symptoms like this before and they only came on with the severe pain and constipation after the iron infusions and it was literally so bad that I knew that something tore because I could just feel it and then the bleeding started after that. Thought it was a fissure. I do acknowledge that I have irritable bowel syndrome because that has been ongoing since I was in my 20s but I have never had any major bleeding or diarrhea EVER and other colonoscopies and sigmoidoscopies have found nothing. I have a medical background in radiography and have worked in many doctors practices and I have seen a lot of crazy things and misdiagnoses so it's a little bit hard for me to trust doctors. I have been misdiagnosed before with fibromyalgia when I really had lyme disease. I would probably be dead right now had I not had a good nurse practitioner who was able to read the test results accurately and sent me to an infectious disease specialist for which I spent a year and a half on antibiotics and fully recovered 🙏🏼 Ten years ago. I guess I also wonder if that long course of antibiotics didn't throw off my whole system as well?
I am doing exactly what the doctor said to do and I am using Anusol one time a day and Canasa at bedtime as I definitely do not want this to spread if I truly have UP. If I have it, which I plan to follow up with a second opinion in January, then its never caused me enough problems to notice. This,in contrast, is unbearable. I chalked up the minor issues I was having in the past to internal hemorrhoids which I also have and that has made it a little bit difficult for me to differentiate. The reaction my body had after the iron infusion was so severe that there was no doubt that something was wrong because every time I went to the bathroom there was blood on the toilet tissue which is extremely frightening and that has never happened to me before, either.

OK, The other thing that concerned me was my gastroenterologist acted like it was so mild that it really wasn't a big deal. I was upset when he told me what he found and I asked him could it have caused my iron deficiency and he said that there was no way it was severe enough to have caused me to have anemia? That's another reason why I want to second opinion because I just don't think this is all adding up. I'm in really good health otherwise. Well, I guess the fact that I only eat meat once or twice a week could be the reason, I'm in my 40s, and my body is changing . I'm already gluten-free and I eat little dairy and mostly vegetables. I have coffee two or three days a week and I do eat some chocolate every day. I'm exercising five or six days a week.
Any ideas of what else can I do while not causing myself further iron issues? I'm in a masters program and I have four teenagers of my stress levels are going to stay pretty high and I've noticed an increase in problems with an increase of my stress.
Side note, I am so thankful for this board and for finding you guys because I felt really alone and nobody really wants to talk about this because it's so personal. It can be really isolating.

Post Edited (Savannah6) : 12/27/2016 7:00:58 AM (GMT-7)

Hmm. Oral iron can certainly cause bad GI issues including constipation. But IV iron bypasses the GI tract and, as far as I know, shouldn't affect it. I'm wondering if you had an allergic reaction to the iron somehow. Not all IV iron formulations are the same. I had an anaphylactic reaction to the first infusion I had (passed out and woke up on the floor with doctors and nurses around me). Since then I've had several iron infusions with a safer formulation called Ferinject without any issues.

As far as eating healthily, going gluten-free, etc. is concerned, that's such a common theme amongst newcomers on this board, I'm beginning to seriously wonder if an unhealthy diet has a protective effect against developing UC somehow. Wherever guys who chow down on pizzas and beer and develop UC go, it isn't here.

At any rate, it sounds like you could perhaps use more fats, meat and maybe even gluten in your diet (most, if not all, refined wheatflour is fortified with iron and common B vitamins). I'm reading between the lines but it sounds like you're eating a pretty limited diet consisting mostly of veggies and a bit of chocolate every day. Do you get enough fluids as well?

Edit: You seem to be doubting your new diagnosis. Ask your doctor if it's IBD i.e. inflammatory bowel disease. If it's IBD, you have a chronic disease - welcome to our world :-/

Thanks for all your comments and support. I went gluten-free because a blood test revealed that I'm allergic to wheat. Gluten free eating is the easiest way to avoid wheat in most products. I do eat oatmeal and other flours. I eat a lot of eggs and I eat an avocado every day and I'm about to start juicing to see if that helps dial down my inflammation.
As far as that hellacious iron infusion goes, i'm on a support group for people with anemia and many of the people who have irritable bowel syndrome can't tolerate oral iron pills or infusions so they have to try other things. I didn't realize it would flare me up like that or I would've never done it because I'm in a three-month flare and this has never occurred in my whole life. On the bright side, if I really had this and this whole time thought it was hemorrhoids or was misdiagnosed with irritable bowel, then it's good that it was found so I can treat it and take care of it because I definitely don't want it to progress or ignore the situation!
I'm looking forward to getting a second opinion!

Any suggestions for probiotics?

Post Edited (Savannah6) : 12/27/2016 8:24:10 AM (GMT-7)

IT is worth clarifying proctitis versus ulcerative proctitis. if biopsies were not done, clarity is not possible.

I have not heard of IV iron causing IBS problems - but if you know people 1st hand that report this ...

I suspect that the long course of antibiotics set you into a long slow development of UP.

I agree that more attention should be paid to investigating how you got so anemic. It could be very telling.

anyway, start by clarifying if the diagnosis was UP based on biopsies.

good luck