Diary of a Colitis Flare-up

Diary of a Colitis Flare-up

I thought it might be useful for UCers to read about the timeline of a flare-up to get a clearer idea of how they can progress - I often see the question 'how do I know that I'm having a flare-up?' asked in the Colitis forums. Hopefully this will make it a bit clearer.

Important - keep a diary!

The following info is only made possible because I've kept a detailed Colitis diary where I make notes on symptoms, diet and meds. I've managed to discover a fair few things because of it:

  1. Some foods that cause symptoms
  2. How certain types of food cause specific symptoms
  3. How long it takes food to travel through my system
  4. The average time my flare-ups last
  5. What helps bring me back to remission
  6. How long it takes to get back to remission

If you aren't sure how to go about keeping a colitis diary, it may help to see how I keep mine: Colitis diary details

Let's get started...

I've split the flare-up into weeks to make it easier to follow, plus I've left out days where the same symptoms keep occuring (a common thing with Colitis). I also started the record of the flare from when I first felt rundown in order to show that it's possible there may be clues that a flare-up is just round the corner.

Week 1

Day 1 3 days before the first symptom I generally felt slightly ill - this lasted for 5 days and included trouble sleeping
Day 2 2 days before the first symptom I ate leek and cabbage heated with butter - months before cabbage had caused some strange feelings in my colon when I'd tried juicing it.
Day 4 1st symptom I noticed a couple of bits of mucus in the stool
Day 7 1 & 3 days after 1st symptom Stupidly I ate cabbage another two times during this week, despite noticing some strange feelings in the colon!!

Diary of a Colitis Flare-up - diary chart

Week 2

Day 10 2nd symptom & start of flare I noticed mucus and blood in the stool. Because this is the first time I spotted a tiny bit of blood, I'd noted it as the 'official' start of the flare
Day 11 3rd symptom Although there was no blood or mucus, urgency starts which tells me I'm definitely heading into a flare. My stool also starts to become softer. For some reason I remain on 2 x 400mg oral mesalazine per day!!
Day 12 4th symptom The first sign of liquid stool today with mucus. At the early stage of a flare it can be confusing when symptoms are coming and going but as UCers we should jump on a flare at the first signs.
Day 14 Multiple symptoms together Blood, mucus, urgency and liquid stool - the flare is under way yet amazingly I'm still on only 2 x 400mg mesalazine after 14 days!! I can only assume I was hoping it wasn't a flare. This can happen after a period of remission - you convince yourself it can't be happening.

Week 3

Day 15 Increased Mesalazine - at last!! The penny has finally dropped and I up the mesalazine to 6 x 400mg per day. The silly thing is it takes a few weeks to start working so I should have been at this dosage 2 weeks ago!! I chose Asacol instead of Ipocol - Ipocol mesalazine seems to work better for me. However the symptoms were in the sigmoid / rectum area and I know Asacol takes longer to release in the intestine, so I felt Asacol would be best for reaching that area.
Day 16 Increased bowel movements Ironically, even though the bowel movements (BMs) went up to 4 today, there were no other symptoms! That's colitis, it can be confusing.
Day 20 Symptoms outside the bowel Up to 5 BMs today, all with blood and mucus plus a feeling in rectum that I need a BM. Today also, general feeling of illness and itchy skin in the same area as my past 2 flare-ups. Although I know there are good bacteria in yoghurt, today I cut it out of my diet - dairy causes more mucus for me. I also start taking Moringa capsules to help with my overall vitamin, mineral and essential amino acid levels.

Week 4

Day 26 Cut out bread Even though I make my own bread and I don't believe I have a problem with gluten, I decided to cut it out of my diet.
Day 28 2 weeks on Asacol I was hoping to see some changes by the 14 day Asacol mark, but BM symptoms are consistent as is the itchy skin. Also, on and off I have trouble sleeping and a general feeling of illness

Week 5

Day 31 Increase in BMs, change of mesalazine Instead of seeing an improvement, by day 31 the BMs are increasing - up to 7 today. I decide to switch over to Ipocol oral mesalazine to see if anything improves.

Diary of a Colitis Flare-up - diary chart

Day 34 Start Liposomal Vit C In an attempt to take control of the general feelings of illness I start taking sachets of Liposomal Vit C.

Week 6

Day 41 Decrease in weight From the diary I can see my weight has been dropping - approx 9lb / 0.6 stone / 4kg since the start of the flare. It also becomes visually noticeable around this time. An increase of blood in the BM is noted in the diary. Also, today is the last day of a slight cold virus I picked up - something that can prolong a flare-up. Judging by how ill people around me are, I believe the Vit C helped eliminate the virus quicker than it would have without taking it.

Week 7

Day 44 Blood stops I note that the blood has stopped for 3 days - this doesn't really mean anything until it lasts for a couple of weeks.
Day 45 Blood returns I told you! It's difficult to not raise your hopes when you see an improvement, but it's better to stay prepared for symptoms to return because it helps to soften the blow if they do.

Diary of a Colitis Flare-up - diary chart

Day 48 Run out of Ipocol Through some miunderstandings along with mistakes by my Doctor's surgery, I run out of Ipocol and don't get another prescription for 7 days!! This illustrates why you should plan ahead with Colitis. It's about the time I'd hoped the Ipocol would begin improving my symptoms - as an example, the number of BMs had dropped.

Week 8

Day 53 Another cold virus!!! Very annoying to pick up yet another virus from people around me. I understand why colitis sufferers become nervous if someone they work or live with picks up a virus - it can cause so many extra problems. Again, I manage to keep this virus low key by taking Liposomal Vit C e.g. it doesn't develop into a major cold for me (it does for others), although it lasts for almost 2 weeks.
Day 54 Consistent symptoms By the end of the week without Ipocol my BMs were back up to 7 a day again. BM symptoms have remained consistent for the past few weeks.
Day 55 Ipocol and Pentasa When I finally pick up my Ipocol prescription, I also request pentasa suppositories because I felt the oral mesalazine was not reaching the sigmoid and rectum where the consistent problems remain. I start using both meds today.

Week 9

Day 60 Weight My weight reached the lowest point of the flare-up (11.3 stone, 72kg, 158lb) - I had lost about 1 stone / 6kg / 13lb. I feel most of this is down to a restricted diet as opposed to not being able to absorb food.
Day 61 Improvements I felt things improved throughout the week of starting Pentasa - mucus showed improvements within 2 days. The number of BMs dropped to 2 per day today.
Day 64 Flare almost finished Today the only symptom was slight sigmoid discomfort during the BM (only 1 BM today). Interestingly, looking at the diary I see this is the day the virus (that started on day 53) finally disappeared.

Diary of a Colitis Flare-up - diary chart

In summary

Although it appears that only the pentasa and the mesalazine bought the flare to an end, I can also say that the Vit C helped stop the viruses from causing extra problems (viruses made me very ill in a previous flare).

Outside of this, during the flare I stuck to a dairy, gluten and wheat free diet (I haven't eaten sugar for some time). A while before this flare, I'd also decided to stick to an organic diet. I believe this has also helped keep the flare from declining to the level of previous flares.

I started taking certain supplements during this flare but can't say that they made a significant difference - this could be down to the dosage amounts I used. I've read success stories by UCers using supplements, but they had been taking larger doses than me - sometimes 10 times more! This might be a clue as to why daily supplements have little effect for many.

It's interesting to see how far into the flare-up I was making decisions on changing meds, diet and supplements. At the start of every flare I tell myself it can't be a flare, or that it'll be different this time and disappear in a few days. Unfortunately I feel this can lead to an extension of each flare-up - it's something I need to accept and work on. In fact, I believe acceptance can make living with Colitis easier.

Some UCers believe a flare runs it natural course and the body would fight it off naturally - I've read posts by UCers that stay med free during a flare which runs it course and eventually subsides. I guess this could be the case with less severe flare-ups (the majority of my flare-ups seem to last around 6 weeks), but I'm not confident enough to test this theory yet!

As a final thought, although this is a heavily edited version of the flare-up in my diary, it shows that I'm still making mistakes and learning after years with Ulcerative Colitis. Not sure if that's a good thing or not, but at the very least it means that if we're prepared to keep learning, as UCers there should always be the hope that we might find something to improve our symptoms, even after many years! Worth keeping in mind if we have a bad day