I am 75 and diagnosed with UC in 2015 which I think was caused by months of antibiotics for infection after surgery.
Current Symptoms:
Bloody watery diarrhea with little stool,cramping,bloating and urgency. Awful fatigue and weakness and lightheadedness
Karen’s Story:
I am currently in a bad flare which has been going on for months. I am losing a lot of blood and watery stools. I would like to know if anyone experiences extreme weakness especially in legs during a flare. I take generic Lialda 2 per day but bump up to 4 during flare I just started taking L glutamine 2 days ago. 500mg capsule once a day. I am 75 and have moderate diverticulosis. I was diagnosed with UC in January of 2015 after experiencing bleeding. I had a colonoscopy which showed UC throughout the entire colon. Was put on Apriso but then changed to Lialda 2 pills once daily. It worked pretty well with some flares now and then and in January 2017 a colonoscopy showed no inflammation but that didn’t last. I have had had some pretty bad long lasting flares since then. Tried a 2 week course of prednisone last fall and dealt with awful side effects that lasted for months after stopping them. I am so weak and lightheaded right now during the current flare. My hemoglobin is good but my iron saturation is low because I’m not absorbing any nutrients. My doctor put me on 28 mg of gentle iron by Solgar. I find I get dizzy after taking it. If anyone takes iron how does it make you feel and how much do you take? I also started Renew Life probiotics which I’ve taken in the past. I am desperate to get the bleeding stopped as I have no energy and feel like my legs won’t hold me up. I would love to hear any suggestions from those who have gone through really bad flares. I have been miserable and tired of the urgency and bleeding.
Thanks for any help and suggestions you have.
Current Medications and supplements: Generic Lialda,L glutamine,Renew Life probiotic
written by Karen
submitted in the colitis venting area
I currently live in Arizona since retiring in 2001 I enjoy golfing and cruising with my husband
For iron I take “Blood Builder” with no side effects at all and they work well. Google them or find them on Amazon
Karen,
This flare will pass.. I had a flare similar to yours, my doctor prescribed Uceris, which is a steroid similar to prednisone.
Probiotics, I believe, make the flare worse, so I suggest not to take probiotics while in a flare.
The food that worked for me is going with low fiber, such as mashed potatoes and butter, saltine crackers, avocados and for
a drink Pedialyte Electrolyte Solution to get hydrated.
Also, Look at https://www.umassmed.edu/globalassets/nutrition/ibdaid-food-list/foods-list-updated-aug-1.2019.pdf
for a good map of what to eat during a phase I.
I know we all want it to go away like a switch. But think of it like a dial. It takes time for the colon to heal.
Karen,
Fingers crossed that you find a solution for your flare(s).
For your iron saturation, have you asked the doctor if a round of iron infusions would be appropriate for you? That gets it right into your blood stream. Last time I had to opt for that, it was a 4 doses I think. Neither the pills or the liquid iron options were doing much good at that time. I didn’t have any bad reactions to this infusion, but I did taste the iron during the infusion process. It definitely helped my energy level and I was able to handle the flare better.
How did you feel when your iron was low? What were your symptoms?
I was where you are at one time. My doctor tried all the same things you mentioned, helped me very little. I actually became severely anemic. Had to had a iron infusion.
My doctor finally got Humari approved and put me on mercaptopurine. I was so sick and exhausted all the time. I am 60.
Within about 5 weeks I went into total remission. Of course I still have the bowel upsets you know diarrhea when I eat the wrong things. No blood in 2 years!
I take a Humari shot once a week and one mercapatopurine once a day. It really was a life chsnger for me. I have been on it for 2 1/2 yrs now. Praying you get help.
I hear you – I had the same.
There is a book here on this site, which I wrote to help people who have a bowel still. I refused the operation while I tried to heal myself.
Search: Cathy’s Free eBook on the home page of Atom’s site.
Sure hope it helps you.
So much great information on this site. You can pick which way you would like to go.
I’m sure as you read about others and their way of proceeding you will instinctively know what sounds right for you as you read of others.
To your recovery.
Cathy Miller
hugz
For those who have had low iron with a UC flare,what symptoms did you have with the anemia? Dizziness,weakness,?
Tiredness from anemia
I am in a 6 month flare. My fatigue has been off the chart with difficulty breathing while doing things like showering. I just finished 5 iron infusions and am hoping for relief from this fatigue. I started Humira but it’s a rough road. Just started getting joint pain. Not sure what’s next.
I have been living with colitis since 2015. Diagnosed via a colonoscopy after having terrible;e symptoms. Was out on FMLA for 12 weeks with various symptoms related to the Colitis as well. Was not absorbing protein and nutrients. Lost 35 lbs. Decided not to go Humira route when the Gastro doctor suggested it. (I barely take aspirin!) I see a Naturopath/Chinese medicine doctor as my Primary doctor and I also went to a Nutrition Response Testing doctor. Incredible. Changed my life. They hworked together as my “team” and helped me change my diet completely to get the inflammation in my gut down. I not eat whatever I want within reason. When I have a flare, I immediately clean up my diet, practice more meditation and yoga (to reduce my stress levels) and lay off any beer or wine. To clear out the inflammation I stopped eating ALL of the trigger/allergy foods: gluten, bread, grains, dairy, sugars, and no sugary (carrots, beets) vegetables. I ate protein and cooked green vegetables. To bulk up I made plantain bread and hazelnut flour blueberry pancakes. I basically starved the inflammation in my gut so it had nothing to eat. I cheated. Then got back on track. Then cheated again. Then got back o track again. I also took e a potent probiotic called VSL#3. It’s expensive but Costco has it for a little cheaper. I think it definitely helped. I eventually stopped it. I also did and continue to take Vitamin D with K regularly (1000-2000) in liquid form so it absorbs easier. There are a few Chinese medicines that helped: “GI Care” and “GI Care (UC)” by a company called Evergreen. I recommend finding a good Naturopath with a Chinese Medicine background. It took me about 8 months for my system to regulate again and now I just maintain it.