First time flare

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lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/12/2018 7:29 AM (GMT -6)   
Hi, I've recently been diagnosed with UC in November.

What started with a little blood in the stool led to me spending 4 weeks in bed in November.

I had a failed colonoscopy in the middle of November as the inflamation was that severe they couldn't make it all the way around.

I've been on Pred / Octasa since the colonscopy and I must say I started to feel much better. The doctor prescribed me enemas twice a day since the middle of December.

They started me on 4mg pred / 4.8mg Octasa and I've gradually felt better.

When I spoke to the doctor in December, I voiced my concerns about tapering on the pred as I started to get symptoms returning. He advised I stay on 25mg until the end of December and taper 5mg a week which I have been doing.

I'm now down to 15mg and symptoms are really starting to show again. I've increased blood and mucus and feel really tired with little motivation.

I must say at this point, I've not passed a stool in months that didn't have blood in it but pred seems to control it during the day to the point where you almost can't tell if there's blood but on wiping you can see there is small amounts.

Since dropping to 15mg on Monday I've noticed quite a drastic increase in blood and mucus though.

I'm not due to see my IBD nurses until the beginning of Feb and I won't see my doctor until the end of Feb.

I'm concerned as I feel like the Octasa and the enemas should be doing a lot more than they are? The doctor prescribed the enemas when I told him that I was still passing bloody stools during the night but I'm not sure if they've made a difference?

I'm trying to keep away from the things that cause me real issue (which seem to be chocolate and alcohol) so I feel like I should be getting somewhere quicker than I am.

This all started in August and action really started being taken in November. I don't know when to expect some normality? Should I call my doctor or is this normal with a pred taper than I experience some symptoms and hope the other meds kick in more?

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12526
   Posted 1/12/2018 8:11 AM (GMT -6)   
Welcome to the forum, but sorry to hear you are still struggling with UC symptoms this many months later. Sounds like your maintenance medications are not sufficient without pred. It's not all that unusual, as there is a whole lot of trial-and-error when initially treating your UC. It's common for our doctors to not get our meds/dosages right the 1st time, 2nd time, and sometimes even the 3rd time.

Why? Many gasteroenterologists start with the 1st class of UC medications anti-inflammatory mesalamine (in this case your octasa and enemas) which are the weakest medications available for UC. If that's not strong enough then it is necessary to add the second class (immunomodulators like 6mp/Imuran/azathioprine) and/or third class (remicade/humira) of UC medications to your current treatment. Treatment is additive, with combination-therapy showing the best results for most of us.

Seeing a dramatic relapse of blood while tapering prednisone is a huge, red, waving warning flag. If you continue tapering pred then you are going to return to a full-blown flareup. You are prednisone-dependent at your current dosage, which means without pred you return to an UC flare state (there's no physical addiction it is a bit of a misnomer). I've had this happen to me multiple times and there is a solution.

What you should do in that situation is:
1.) Go back to your last safe dosage of pred where you did not see blood
2.) Contact your gasteroenteroligist as soon as you can (phone/email/webportal) and tell him/her about what you've experienced.
3.) Expect additional medications and/or stronger doses to be prescribed to you.
4.) Hold at your safe dose of pred until the new medications are given sufficient time to work.
5.) At doctors instruction of when, continue the taper to zero. With your new meds and doses you should be successful this time.

There will be a solution for you and you will feel better (although we all want to be better yesterday). It is a process to get UC under control, be proactive and get a hold of your doctor. Most of us feel 100% normal on prednisone and there's a chance we start relapsing as we taper down when our maintenance medications are insufficient. Just remember that it often takes a lot more medications to stop a flare and get us into remission, than it does to maintain a remission.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

A semi-finalist in the Olympic 15-meter bathroom-sprint. Aimed for the gold but just ended up getting brown...

lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/12/2018 8:19 AM (GMT -6)   
Thanks iPoop,

I must say that I've never had a point where I didn't see any blood and it's shown as I had a severe low blood count at the end of December which the doctor prescribed me iron tablets. These did put a little colour back in my face but walking distances of more than half a mile seems to still knock me out.

The only time I generally see blood is during the night but it does feel like there's much more of it at the minute.

I'll give me doctor a call and see what he says.

Thanks again for the advice. I've been watching these forums since November when I was diagnosed and they've been a great help.

I just want a little normality now! (I wouldn't mind at some point to be able to have a drink or 2)

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/12/2018 1:21 PM (GMT -6)   
Hi...welcome to the forum!
What exactly are the enemas that you are on?

You should ask for the doc to give you a stool sample kit for testing.

Ive been on nightly enemas for as long as 4 months with some bleeding, so it isn't surprising to still hear you're seeing blood at this point.

How has the consistency of the stool improved since being on the meds....this will tell a lot. How many times are you going compared to before being on meds.

Try not to focus on the blood.....from the sounds of it, you have lots of healing to do. Healing happens in increments, and UC seems to have a pattern in its healing.

Hang tough....try to recognise what has improved so you understand where you are at this point.

Keep us updated,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/12/2018 2:14 PM (GMT -6)   
Hi Quincy,

If you saw me in November then you’d not believe the difference. I was literally bed ridden with no motivation and had no interest in anything. At that point I hadn’t eaten for around a week and hadn’t passed stool for 15 days.

So on that note I feel a million times better, I just don’t want to go back to that.

The pred seems to help with hunger and does control the stools during the day. I’ll pass probably 2/3 stools during the day which are like little balls.

Night time (9pm until 7am) I’ll go the toilet around 3 times which is normally blood. I was going during the night around 5 times before medication and it also put me in a lot of pain.

Although I don’t go often during the day, if I’m walking anywhere I normally find that it sets me off and I need the toilet. I went out shopping with the wife during Christmas and I lasted about 30 minites before needing the toilet. I was also anxious as I hadn’t a clue where I was going to find a toilet. It’s really changed my life. I’ve never had to think about when I can leave the house or what happens when I get there.

If I could have what I have now but without the pred I’d be happy in the short term.

If I could get back to how I was before all this and I’m jumping out of bed at 7 I’ll be a happy man. I can live with the inconvenience of the disease if I can have the same energy I had before.

I’m sure I’ll be back to give some updates, hopefully about remission.

Sorry if I’ve made any mistakes, I’m typing on my phone

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12526
   Posted 1/12/2018 2:35 PM (GMT -6)   
You've come a long way but have further to go in the healing process. Going 6-8 times a day on pred isn't something to settle on (well at least it is better than before... a trap) and one that leaves you ready to flare again sooner rather than later. As the treatment goal for UC patients is to get them into a stable, quiescent/deep remission where you essentially have a normal quality of life. We've had posters who've been in a remission 2, 3, 5, 8, or more years with a variety of different UC treatments. Unfortunately we all will eventually flare again, but when we are well-managed with an appropriate maintenance-treatment then the flares are mild, infrequent, and shorter.

For me, remission is 1 formed bm a day without urgency, without blood or discomfort. It is 99% like before I had UC. I say that as bms are now generally a little softer, sometimes I'll go twice and there's a bit of variation I never had pre-uc. The no urgency is the real win though, you can forget you have an UC and go about your day without anxiety/worries! So, don't settle for anything less than a remission. Keep trying for it, and adjusting medications and doses until you achieve a remission.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

A semi-finalist in the Olympic 15-meter bathroom-sprint. Aimed for the gold but just ended up getting brown...

Post Edited (iPoop) : 1/12/2018 1:38:34 PM (GMT-7)


lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/12/2018 3:22 PM (GMT -6)   
Thanks iPoop,

My realistic goal is to have the energy I had before and have the occasional over indulgence without worrying about how it will affect me. If this isn’t remission but some milder symptoms then I’ll be happy.

My doctor wasn’t available today and won’t be now until monday. I do hope he decides to put me on something stronger as I have a frirend’s birthday booker for 10th feb and it would be my first night out since the beginning of October and I really want to look forward to it in some capacity.

I think the main problem I have is that there are so many conflicting stories about how people love with UC that I don’t know what to expect yet and I suppose I really won’t know until I’ve tried different medication.

I’ve already changed jobs to male my life easier and I’ll be working from home now. I plan to exercise more and my diet has changed dramatically over the past 2 months.

I want to be able to go play on the field with my child without feeling knackered after a couple of mins but I know that will all come with time.

I appreciate any comments and your version of remission sounds amazing and hope it’s something I can achieve

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/13/2018 1:52 PM (GMT -6)   
Try not to dwell on what it was like before.....your learning curve will be vast, as will your symptoms. I suggest you recognise each symptom, understand whst it means, how the colon heals, how it will be tapering pred...etc.

I'm assuming your UC is throughout....., and the healing of 6ish feet of colon and a stubborn rectum once it gets limited there is really no walk in the park. It will control your life for a while....but learn the what and why.

Yes, we have differing experiences, life-styles, med and food tolerances, patience, etc. It takes time, and adjustments for the time being are a good thing.

I've not had pancolitis, but my UC has never been as bad as the first few years.....and once things started to make sense and I created the treatment/maintenance regarding meds, it was easier to function and make plans.

Hang tough.....keep connected, and there are always options regarding treatment. Treatment and maintenance will differ depending on symptoms, and if you want to venture into higher tier meds, consider them.

I suggest probiotics....not high dosages, but start. Bedtime on empty stomach.

You are improving.....keep a realistic picture of what's happening. It's always confusing and consuming while getting it all figured out.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/13/2018 2:13 PM (GMT -6)   
Thanks quincy,

The doctor said it was left and right side. He’s going just off the CT scan for that though as the colonoscopy wasn’t possible.

When it got really bad I could feel pain in the left side only so I’m hoping it’s not as bad in the right.

It was mainly the rectum and the left side that I really felt something back in November. I struggled to stand up straight as it would send a shooting pain down the left side of my stomach. The pain which kept me awake st night was mainly in the rectum, it was like a constant feeling of needing the toilet and when I’d go there was noting there but just shooting pains in the rectum.

He said I had at least moderate UC with a chance of severe.

I’ve take ipoops advice and I’ve gone back up to 25mg pred until I can speak to the doctor and I’ve felt a million times better today and only been the toilet 3 times. I even managed a trip out with the wife today with no complications. Shame I can’t just stop on pred! I don’t have any of the side effects that a lot of people seem to get from them but I’m aware of long term complications.

I do have probiotic yogs and I also have aloe Vera shots.

I’ve found a few things that trigger me bad which are my favourite things of course, fizzy drinks, beer and chocolate. Absolute killer over Christmas!

I’m happy that most foods in general don’t really affect me which I’m thankful for

Thanks again and I’ll keep you updated

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/13/2018 8:45 PM (GMT -6)   
Hey...you could alternate your dosage of pred while tapering.

Fizzy drinks, beer and chocolate can give gas and possible diarrhea and upset an already ticked off colon. Won't make your flare worse. Shouldn't be drinking on pred anyway, plus sucks for your liver.

I don't know what probiotic yogs or aloe vera shots are.

Good to hear you got out and about with your wife.
😁
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Post Edited (quincy) : 1/15/2018 8:22:18 AM (GMT-7)


lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/15/2018 8:12 AM (GMT -6)   
I've managed to get an emergency appointment for Wednesday.

I'm going to push for stronger medication to accompany the pred.

I must admit that I don't drink often, I drink once every 4-6 weeks and very rarely drink in between that. It's just nice to have the option.

The choc and the fizzy drinks I am missing though.

Thanks again

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/15/2018 9:23 AM (GMT -6)   
That's good your appt is on Wed....let us know how it goes.
I rarely have soft drinks, but when I do, I have ice and sometimes dilute and stir out the fizz.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/17/2018 7:09 AM (GMT -6)   
Thanks for all your help. The nurse was happy that I increased my pred short term to handle the increase in symptoms so I'm grateful for that.

They've upped my pred back up to 40 and prescribed me some different tablets (Azathioprine). This was on a doctor's advice but she wants to ideally push for me to have an infliximab infusion. She's waiting on some blood results and speaking to another doctor.

She was annoyed the doctor before Christmas put me on iron tablets as she said that would have upset my bowel further and my blood count was so low I really should have been in for an iron infusion.

She's scheduled an emergency iron infusion.

This was all with an IBD nurse today who seemed a lot more compassionate to my symptoms and seems to want to push more than my doctor did. She's also given me a direct line to contact her on if I have any change in symptoms or any questions which is amazing.

I'm very grateful for the advice given here as I probably wouldn't have pushed the hospital as much if I hadn't posted here the other day.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12526
   Posted 1/17/2018 7:19 AM (GMT -6)   
Great news! We definitely have to be our own-best-advocate for what we need to be well, a good lesson to learn early on, as a new UC patient.

Expect azathioprine to take about 3-months to show an improvement, a very slow acting medication. If they go the biologic route, remicade/humira, then you might have a response within a few weeks time, as they are a lot faster acting.

lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/17/2018 7:51 AM (GMT -6)   
They've only put me on a month's initial prescription. I think mainly to make sure there's no adverse effects to my system as the lady rhymed off around a thousand side effects.

She did mention that my body has to start working with it though and it does take time, that's why she was pushing for the infusion as she thinks it's been going on long enough (since august) that I really should be seeing results and she wants to get me back to some form of normality as soon as possible.

Fingers crossed now though I should start seeing some real results.

Thanks again

lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/17/2018 11:09 AM (GMT -6)   
They've called me back today and said they're going to do the infusions instead. She wants some faster results.

In Friday morning for a consultation and a chest x-ray!

Fingers crossed it'll be all good and I start seeing some results sooner

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/17/2018 11:31 AM (GMT -6)   
Good to hear you talked with the nurse and are going to have further treatment.

Let us know how you are foing,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12526
   Posted 1/17/2018 12:35 PM (GMT -6)   
If they didn't explain why to you, they order a chest xray to look for previous signs of Tuberculosis infection (it would show up in a lung xray if so).

They often do a skin test for Tuberculosis /TB as well. They prick your skin with killed-tb, you come back in 24 hours to see if there was a reaction(if you've got TB then that site would be red and inflamed).

Sometimes they do a Hepatitis B test as well, just to make sure you don't have that infection.

Why? Latent/dormant infections can reappear after going on humira/remicade style biologics. Most of us have not had those infections, and it is easy. It's a good precaution to take though!

lom83
New Member


Date Joined Jan 2018
Total Posts : 15
   Posted 1/17/2018 2:49 PM (GMT -6)   
They did explain all the reasoning and the nurse was so on the ball she predicted that they would put me on the different meds and she ordered the extra blood tests up front so I’ve had them done today when I had my other bloods done so I’m all set to go apart from the X-ray.

I really feel like I’ve found a person who actually listens rather than just reading the data and actually speaking and understanding what I’m going through.

I just hope it’s the silver bullet that regains normality. I just want to be able to plan something without worrying about it in advance.

I was speaking to my friend who is a nurse and she is on the ward which administers the drugs so I might even be treated by one of my friends which is nice.

Looking forward to seeing what will happen
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