Mayday! My Flare is Winning

Introduction:
Hello, I’m a 29 year old girl from Massachusetts. I was diagnosed with UC in September of 2010. Hobbies include playing the piano/guitar and mapping out public restrooms on my commute.
My Symptoms:
Bleeding, 15ish trips to the bathroom, problems with having accidents (yikes!). This week I’ve had problems keeping my food down, acid reflux, and the chills/ache/headache “colitis flu”.

My Story:

UC is kicking the shit out of me. Literally. I have had UC for about 2 years, and after being put on Asacol and enemas had a year of moderate remission. Until this past December, when I started a slowly progressing flare of increased bowel movements and bleeding.

I still felt like I had it under control until about 2 months ago, when one morning, my roommate took a shower. In our only bathroom. Even though I had already gone 3 times that morning, I really, really, needed to go again. I managed to grab some plastic trash bags and tissues and get over the disgust of going the bathroom in my bedroom.

Until it happened another morning. And again. (About 10 times in the last month. I’ve even started to keep the trash bags in there to be safe.)

Since then, my UC has been kicking my butt. I’ve called my doctor’s office but can’t get an appointment until the end of August, and my voicemails and emails have gone unanswered. I even trekked to the ER last night for dehydration, but because my blood levels were normal they sent me home after a refreshing IV, and told me to get in touch with my GI doctor.

Also, I have a secret confession: I’ve had 4 public accidents this month, 3 just within the last two days. After searching for the elusive SCD dry curd cottage cheese at the grocery store this morning, and having to bolt back to my car because of yet another accident, I have had enough. I spent 10 minutes sniffling in my driveway before coming in to write this post and leave another message at the hospital.

It is so horrifying to be in your 20’s and wondering if you need to buy some Depends to run to the grocery store. I also can’t seem to keep the enemas in for more than a minute or two, which was the ER recommendation for treatment.

So people that have been through this-HELP! Has my Asacol stopped working? I’ve been taking 12 pills a day. Should I keep going through the enemas until I can keep one in?

Any advice on my missing in action doctor?

And what the heck do you eat? The last 2 days I’ve been living on ripe bananas, chicken broth, and scrambled eggs while I try to take back my bowels. So far the blood is less but I’m still lacking control.

Thanks for the ventfest.

Where I’d like to be in 1 year:
Not breaking out in cold sweat everytime I’m in public and not near a public bathroom.

Medications:
Currently taking Asacol. Trying my damnedest with the cort. enemas but can’t keep them in anymore.

written by Court

submitted in the colitis venting area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

12 Responses to Mayday! My Flare is Winning

  1. Kelly July 4, 2012 at 7:57 am #

    Hi Court. So sorry to hear you are having such a hard time. You need a new doctor… now. It is unacceptable that they would make you wait 6-8 weeks before checking on you or prescribing anything. For each of my flares, I at least had phone contact with my GI or the NP at my GI’s office on a weekly basis to let them know how things were going and if they need to add meds or of I could start tapering. You should be able to call in and at least speak to someone on the phone about your issue (and get you on something else as obviously the enemas aren’t working), asssuming you have been to this GI in the past. I also live in MA, and I recently was switched to Reliant Medical Group out of Worcester when my local GI couldn’t get me off of prednisone. They were so responsive. Again, making you wait so long with obviously life-altering symptoms is unacceptable. Call them tomorrow and make sure they know how sick you are and if they still can’t see you or prescribe something else, make the change ASAP.

  2. Laura from Toronto
    Laura July 4, 2012 at 10:08 am #

    Hi Court,
    I have had similar problems, the morning stress, the accidents…what has worked for me in slowing down the bowels, and pain is the following. I cook up some arborio rice (the italian one) with diced up potatoes and some chicken bouillon ( I use the organic kind, less additives), that’s it. You will have to stay at the stove as it cooks as sometimes you have to add water, by the end the water is absorbed and it’s a bit of a mush. Eat only a few tablespoons at a time. Never feel full, but eat every hour or so, or when you start to feel hungry. Make the last time you eat no later than 7:00pm. I usually eat scrambled eggs to add a bit of a variety but it really seems to help when things are spiraling out of control for me. Good luck and sorry to hear, I totally understand what you are going through.
    Laura

  3. Chris from Massachusetts
    chris July 4, 2012 at 12:07 pm #

    I am a 29 year old from Mass as well! I can definitely relate to your story!! This disease means business. I was diagnosed in November 2011 and have been using the SCD diet to treat it.

    First off remember what BTVC (Breaking the Vicious Cycle) says: your body can handle proteins well, fats moderately well and carbohydrates the least. When I say carbohydrates I mean: starches, Complex Sugars Also too much fiber is a no no like raw veggies. Too much of irritants is a No No (I once had a pretty bad flare from drinking too much of a ginger drink). In fact the only fiber (aside from legal peeled and cooked veggies and fruits) I have been able to handle moderately well is Bananas and Avocados.

    So here is what I do when I am going through a flare (and believe me they get just as bad as yours!!!)

    1) do not panic or stress about the blood or the diarrhea. They are both the New Normal as i Like to call it. As mentioned in the BTVC it took two years! for her daughter to recover. Also STRESS will only negatively affect your condition- this is when the TV is essential (just sit in front of it all day) -your body is weak and needs pretty much to rest and relax. Go for very small walks. Listen to music. You are sick and depleted and you need to conserve the energy you are losing from the blood loss. It may end up taking you to this hospital like it did in your case.

    2) White grape Juice – I get the organic kind from Whole foods. White Grape Juice = almost NO Double Sugars. Great way to keep hydrated – that and water.

    3) Liver – buy either chicken or beef liver from Whole Foods. It is cheap. It has the Iron you need to replenish your body from all the blood you are losing. Cook it up in a pan with water until it is brown all the way through.

    4) Avocados – Lots of Vitamin K. Goes good with the Iron you are losing from all the Blood you are losing. Also it is one of the only raw fruits (along with ripe bananas) I am able to eat when going through a flare. Very Easy to Digest.

    5) Do NOT eat all meat products. Although Meat is the most tolerated of foods it is a double edge sword. If you only eat meat you will get constipated. I always eat my meat with an Avocado and even then I will have at least one to two meals with no meat at all.

    6) Mom’s Chicken Soup at whole foods. The one here in Woburn has it both Hot and Cold – never has given me a problem – No Rice, Potatoes, Or any other bad stuff.

    7) The SCD Yogurt is very tolerable! It sits great but don’t over do it.

    8) I will mix raw (pasteurized) egg white into my drinks and a lot of the time will just drink it raw. It is Safe. The pasteurization kills all the bad bacteria. Whole foods brand is $3.99

    9) Seasoning I use either Whole foods Dijon or German Mustard with my Liver. – Yummy! Salt is fine. Spices are fine – but read labels Carefully.

    10) I will sometime mix Lime juice with the White grape juice (and sometime egg white) with some seltzer water – this drink does wonders for me. They sell the lime juice (WH Foods brand) for like 2 bucks at whole foods.

    11) Ripe Bannans are fine. I put olive oil on mine because I need the calories.

    12) Again remember that protein is the easiest to tolerate but if you have too much of it it will make you constipated which sounds good now but believe me can be just as bad as the diarrhea sometimes. Try to get a lot of your protein from liquid sources. I like Egg White and Liquidly Yogurt and SCD legal chicken soup.

    Hope this helps! Usually the flare will start to die down (for me that is) in 2 to three days and is gone in about a week and a half. It will takes me a week to two to really get my strength back. Yep this disease means business! I am no longer able to eat out really because I do not trust restaurants! If I do it is never more than one time a week and I get a burger – no bun, no sauce, with steamed vegetables – again nothing on them. The smallest slip up can really do me in! If you want to do the SCD you have to be really REALLY strict! No taking chances.

    For me a Flare does not show up until two or three days after I eat the illegal food. So you might have an illegal food and then think you got away with it when keep going… watch out for this!

    Also remember don’t expect hard poops for a while. Just because you see a little blood and have 3 to 4 loose stools a day – don’t think you are doing anything wrong. You have to know your body. You can feel when you are doing well and not doing well. Just like BTVC say it takes a LONG Time to heal UC.

    Keep Fighting Court! You are not Alone! Remember to take it easy on yourself – and Breath!

    Chris

  4. rico July 4, 2012 at 1:37 pm #

    hey court,dont waist your time with meds and diets,it will make it worst,i hade uc for 2 years,getting jpouch surgery on friday morning,the drugs made things get way out of control,been on them all,im on long island and the city got the best docs if you can make it there,hang in there best of luck to ya.

  5. Maggie July 4, 2012 at 1:54 pm #

    Try a liquid diet until you can get it under control. Try probiotics but start out slowly. Drink chamomile, spearment, and ginger teas. Lots of fluids, back off solid foods because they make your bowels overwork and they need rest. Hoping for the best for you.

  6. Noel July 4, 2012 at 2:58 pm #

    Hey Court,

    I’m 43 and a teacher. When I started having public accidents, I turned to Depends. As awful as I felt, there was some peace of mind knowing my clothes weren’t ruined. I carry baby wipes (the flushable kind) in my purse to help with cleanup, and a spare pair Depends. I keep extras at work too- so if I had an accident, I wouldn’t have to go home.

    In December I started Remicade, and for me it’s been the answer so far. Staying out of stress, too

    I echo what the other person said- unacceptable for your GI doc to make you wait. Get thee a new one!

  7. Polly
    Polly July 4, 2012 at 3:24 pm #

    Hi Court,

    Sorry to hear about your current troubles. I empathize!
    You must be a strong person to be out and about in your current situation! When I was in your shoes, I spent 3 weeks locked up in my apartment. It will get better.
    As far as what to eat, I would suggest organic sweet potatoes (the white ones). They were the only thing that I could keep down when I was in that terrible state. I would also suggest drinking coconut water (I like the Vita Coco brand) since you for sure are super dehydrated.
    I agree with Maggie’s statement above… liquid diet, ginger tea and probiotics!!! I take Primal Defense (Garden of Life brand). Best of luck to you, lots of hugs, feel better soon!!!

  8. Bev July 4, 2012 at 3:45 pm #

    Hi…

    I had to stop the asacol when I was taking 12 pills a day…it was actually making things worse! Barely making it to the bathroom, more bleeding, more looseness, bad nausea and loss of appetite.

    You may need to reduce your dose by a couple or more pills per day. Asacol can actually exacerbate UC syumtoms in some people! Talk to your doctor.

    Good luck
    Bev:)

  9. uma July 4, 2012 at 7:00 pm #

    i think right now you need prednisone. You can slowly taper it off once in remission and then maintain the remission with diet and probiotics and so on. We have all been in this situation and have got over it. So dont worry this is quite normal for a uc’er. Get to the doc and get the prednisone as your situation is a bit bad right now.But nothing serious.so relax.

  10. Milka July 4, 2012 at 7:45 pm #

    You have alot of great advice and thoughts given and we all feel for you. This disease does kick the heck out of you. Reading about accidents and only 1 bathroom… Brings back memories, horrible nightmares actually. It’s hard to figure out what foods help or hinderyour but I think generally it’s easily digestible plain foods.
    You do need to find a new doctor ASAP.
    Out of desperation I found my current G.I by frantically looking online until I found an IBD Clinic at a hospital 90 mins away. Even email the nearest hospital GI area and ask who specializes in IBD. You may get the name of someone. Of course you will need to get a referral.
    Good luck with everything and feel free to vent.. That’s what makes this website so great it brings a UC community together!

  11. Justine July 6, 2012 at 4:41 am #

    Hi Court
    Sorry you’re having such a rough time. I was reading through the comments and noticed a lot of conflicting advice regarding the food. I just wanted to say that everyone is different and you may have to experiment to find out what works for you. When I was in a flare, I did a lot of juicing (mostly veggies with a small amount of fruit), cooked veggies and soups- I avoided meat, dairy, and wheat which are inflammatory foods for me. But honestly, the probiotics seem to be the the thing that work for me. When I had to stopped taking them due to the cost (I take Natren, which is pretty expensive) I started to have symptoms again. Now that I am taking them regularly again, no blood, no diarrhea, and I go once or twice a day. It took a few weeks.
    Also wanted to point out that the symptoms you are describing are listed as side effects for Asacol, so that may be part of your problem.
    Good luck

  12. Court
    Court July 6, 2012 at 7:28 am #

    Wow, thank you all so much for your advice and support! You probably know, but I’ll just say again that it is so incredibly comforting to hear everyone’s stories, it means so much. Thank you for those who let me know that higher doses of Asacol can cause this reaction, I’m going to cut back by a few pills. And Chris-You are a rockstar! Thank you so much for taking the time to write all of that out.

    After talking to my primary care physician I was able to switch to a new GI doctor at a different hospital, so fingers crossed this one is more attentive!

    I also really appreciate the food advice, I’ve been following a pretty strict diet for the week and it seems to be tapering off the constant urgency.

    Thank you, thank you, thank you, for taking the time to make me feel better :)

Leave a Reply