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Constant Flare

Introduction:

Hi I’m Gill, I am a 45 year old mother of 4. I work part time from home (luckily) doing my husband’s books and was diagnosed with UC just before Christmas 2011.

My Colitis Symptoms:

I have patches of UC throughout the whole of my colon and have urgent, frequent, bloody bm’s about 6-10 times a day. Always pass blood, with or without diarrhea, plus severe lower back pain, abdominal cramps, stiffness and pain in my hands and a nasty, flaky, scabby patch on my right palm!

My Story:

I had been a smoker on and off for over 25 years and decided (with immense family pressure) that I had to kick the habit again so started taking Champix. On the 30th September 2011 I smoked my last cigarette. About 2 weeks later, I started getting really bad wind. The smell and frequency was seriously bad! According to the Champix leaflet, this was a possible side effect so I cut the dosage. A couple of weeks later, still with bad wind, I started with bad diarrhea and passing a lot of blood and mucus. Again, these were possible side effects of the Champix, so I stopped taking them and went to my GP, who checked it wasn’t piles, agreed it could be side effects and told me to monitor it for 6 weeks.6 weeks later, bleeding, urgency and frequency of diarrhea worse, I was sent for a colonoscopy which showed widespread patches of UC throughout the whole length of the colon. I was prescribed Asacol and given a follow up appointment for 6 weeks to discuss the biopsies etc.At the follow up, the GI Consultant decided to change the Asacol for Pentasa (humongous) tablets as they only have to be taken twice a day not three times.

Several weeks later, there was no change whatsoever in my condition and it was made worse by severe abdominal cramps – mainly evening, really bad lower back pain (I do suffer with this anyway, but this is mega!) and stiffness and pain in my hands and thumbs. Along with this I had also developed a rather strange patch of skin on the palm of my right hand which itches beyond belief, and gets flaky and cracked. I was referred to the GI Specialist nurse, who decided to put me back on Asacol, plus prescribed pentasa suppositories and enemas. This had nil effect so the enemas were changed to steroid enemas … nil effect so finally given prednisolone for 5 weeks plus continue on the other meds.

After about 10 days, the steroids kicked in and symptoms stopped! What a relief! Even my hand got better! You have no idea what it’s like trying to go to the toilet 15 times a day with a 2 year old – who often tries to push you off so she can go as well! Also she won’t stay in there with me – well who would! So will wander off and get upto all sorts of mischief. Luckily the 3 older ones (10,12 and 14) are great, but once they’ve gone to school it can be awful. During this time, I also got referred to a dietician who recommended low fibre, no lactose and no alcohol (low fibre not that easy for a vegetarian).

Gill and Tilly in UK

Gill with her youngest daughter Tilly

Sadly, on the weaning off in the last week, I started bleeding again, my hand started flaking and my joint and back pain slowly increased. Today, I’m back to square 1. Bleeding with every movement, BM about 10+ a day, severe abdominal pain and lower back pain and a scabby hand. Trying to lose the 10lbs I put on with the steroids! The diet is not really helping, although sadly alcohol does seem to make the wind and tummy pain worse in the evening!

Not sure really where to turn from here. SCD is just too chickeny for me at the moment – even the smell of chicken soup (which I cook for my husband) makes me nauseous. I’ve been trying other meats to see if I could eat it again (it’s been 28 years) but I really don’t like anything about it. I’ve put a call in to my nurse (who’s on holiday) and guess it’ll be steroids again – which made me feel quite sad and very hungry!

Basically I think I am in just a permanent flare. I’ve only had 3 weeks reprieve during the steroids, then it was back to the beginning. Asacol seems to have no effect whatsoever, neither did the enemas which I really didn’t enjoy! Also along with all this I have also been taking probiotics – although only Boots own and Omega 3 fish oils. I did start taking Aloe Vera as it was recommended by a friend with Crohn’s, but then read that it is a mucosa and no good for UC!

Has anyone else been in this permanent flare?

I’m just glad I’m in the UK after reading all you USA sufferers having to pay $500 a month for Asacol. Thank heavens for the NHS!

Also, does anyone else have bad skin patches? or is this just something else – querying psoriasis at the moment.

Also again! Have any of you girls found that HRT interferes or makes it worse? I was diagnosed with early menopause around the same time and have just stopped my HRT to see if the UC improves.

Where I’d Like to be in 1 Year:
In a years time I’d like to be stable – no blood and no enemas! and able to go to the loo on my own and only spend 5 minutes there not half an hour!
My Colitis Medications:
Current medication – 6 x 400mg Asacol daily
1 x probiotic
1 x Omega 3 Fish OilDon’t think any of them are doing any good at all!

written by Gill

submitted in the Colitis Venting Area

Tags: prednisolone





10 Responses to “Constant Flare”

  1. AdamJune 11, 2012 at 7:36 am #

    Hi Gill,
    Thanks for sharing your story, and as well for adding the awesome picture of you and Tilly.

    I remember the feelings of thinking the flare will never never end. Especially after its gone on for several months with just some marginal up and downs in terms of the symptoms. The whole feeling of looking down into the toilet to see “how bad” or “how good” it was each bowel movement is enough to make most people crazy. BUT, you’re gonna get better. You will.

    I use diet to control much of my UC and the SCD diet at that. But, you don’t sound like you’re interested in eating meats, and that’s a huge part of my diet. What you may want to consider is eliminating all carbohydrates from your diet for a few days and wait and see if you notice some positive benefits. Everyone who follows the SCD diet knows that sugars are a big part of the whole game that need to be looked at and usually eliminated, and who knows, you might see enough benefit from doing just that to experience some nice progress with re-gaining control.

    I wish you the best with your UC Gill, and thanks again for sharing your story.

    -Adam

  2. stephanieJune 11, 2012 at 7:49 am #

    Hi Gill, I feel your pain! I have been on several different medications for a year now and still in my constant flare. It is life altering for sure! I hope you find the right meds for you and get some relief soon. Hang in there!

  3. JeanineJune 11, 2012 at 7:59 am #

    Hi Gill,

    I had a very similar experience as you are having. I am now 32 and when my daughter was 18mos I started having sx and they eased with prednisone but never really disappeared. Each time i would try a return to work, sx would return. After 2 years with no real remission and trying everything minus Remicade or Humira and prednisone no longer doing anything for me other than giving awful side effects, I opted for surgery. I had surgery in October and am SO glad I did. I feel so well. Although I have an ostomy which requires maintenance, I am able to be a mom and wife again and feel energetic and well. I have no limitations on food other than making sure I drink enough water with things like popcorn or nuts. I can enjoy salads everyday : ) and am really happy about this because I really love my veggies – esp raw. And with UC, I was not able to do this. I too am an ex smoker although I quit in 2005 but I was taking accutane at the time my sx began and think there was definitely a connection there along with hormonal (after having a baby). If you are contemplating surgery and you would like to talk further, let me know, I don’t mind sharing all the details :) Good luck to you and god bless, I really do feel your sadness about this. It’s a tough road when nothing seems to work. I know others had great success with the meds and diet but these things didn’t work for me. Now I only wished I had opted for the surgery sooner rather than all those doses of prednisone and Imuran. Take care Jeanine

    • JenniferJune 13, 2012 at 9:42 am #

      Hi Jeanine-I started having flares every 6 months begining in 2009-I was diagnosised w/ uc in 2012 tried Imuran and steroids-coundn’t handle Imuran and was moved to remicade for a year until I started having MS symtoms-I have been diagnosised w/ mild ms and am not able to take the remicade-they are currently looking @ 1 other drug that I might be able to try or having my colon removed possiblly in August pending my last colonostomy-just wondered how you had done with your surgery-Thanks! Jennifer

  4. MichelleJune 11, 2012 at 8:05 am #

    Gill, Can I make a suggestion? I have been in your situation to the point that I was forced to stop work and ended up on purinethol, which doubles as a cancer treatment. I was unfortunate enough to have a severe reaction to it, which lead to neutropenia and severe ulceration throughout my body internally, leaving me unable to eat or drink on my own and in agony for days while they tried to restore my immune system. I have also been battling depression, chornic fatigue and other unidentified symptoms throughout the time since my diagnosis (Jan 2011)
    I have been taking Herbalife nutrition products and after 18 months of hell, I am finally able to start thinking about the future again!! I am more than happy to tell you more about the products, but I strongly suggest tracking down a distributor in your country (I’m in Australia) and talking to them about the products. there’s a 30 day money back guarantee on them, so if it doesn’t work for you, you can return the products in that time. But I would seriously suggest to anyone with UC to give these a go. I was seriously depressed and feeling like I had no future. I couldn’t even set a wedding date because I was so ill I couldn’t think straight or cope with anything until I found these products. I’ve been able to reduce my medication and manage my colitis and seen amazing improvements in my fatigue and overall health as a result of the nutrition I am now getting. I just want to share that with you all because I am so excited to be getting my life back. Get some info from a distributor and have a chat with your doctor about it to make sure no medication you are on will be effected!!

    • ReneeJuly 2, 2012 at 8:48 am #

      Hi Michelle…I have also taken a few Herbalife products…cell activator and Flora and always believes they have helped me. What products have you been using? I would like to try any regimen that may help.

      Thank you.

  5. HannahJune 11, 2012 at 10:14 am #

    Hi Gill you story is very similar to mine and I’m now in remission so don’t give up hope. I’m also from the GP and am equally grateful that we have the NHS.
    I went to my GP at the beginning of 2011 with my symptoms-she told me it was most likely a dairy allergy and to cut out dairy and monitor things. Luckily I had the good sense to realise it was more than this. I went to see another GP armed with a picture of the horribleness that was in my toilet! She referred me to the colorectal team, who then arranged a colonoscopy. After this my symptoms got lots worse and I had been given no meds, just a colonoscopy report saying it was probably UC and a follow up appt in a few months time! Luckily I had the sense to visit my GP and not wait for follow up! She gave me a course of Prednisolone which helped decrease the bowel movements somewhat. Then I was put on Asacol, I tried this with Predfoam enemas, with Pentasa suppositories, then I also tried the massive Pentasa tablets which made me feel nauseous. Next stop was another course if steroids. Symptoms were better for about a week. I continued the Asacol, the GI Reg wanted me to have another course of steroids and tested me to see if I’d be suitable for another drug that takes about six months to work. They reassured me that there were lots of options. I decided against more steroids and continued with Asacol and started Mebeverine. It took a while and an acceptance from me that this was for life but I can honestly say I’m feeling lots better. I have no blood and GI to the toilet at least twice a day. I’m not sure how long this will last but I’m ready to face UC when it comes back! Re your palm-I get something like that on my scalp. I think it’s stress related. Stopped completely when I was on steroids! Get it occasionally in my hands now but mainly on my scalp. Am waiting for results from GP who says she may well refer me to a Dermatologist. Have you asked for a similar referral? Might be worth it. I wish you all the best. Thanks for sharing your story and allowing me to share mine. It’s great to know we’re not alone. Hannah

  6. OrdinaryWorldWhereRUJune 11, 2012 at 4:25 pm #

    Hi,
    I too went back to the same symptoms as I was taken off of pred. My doc put me on Remicade and that has really gotten things under control. As far as the skin patches, I got those before the disease and I found that they were spurred on by soy. When I started drinking soy milk and I didn’t know there was a connection, my skin patches really got out of control. I hope you find relief. You may find a lot of different stories of what people did to help themselves and each one will be unique. I just caution you to be very careful in trying out various remedies. There are people out there selling cures that may either want your money or believe that they are special and have the answers no one else has. That goes for any incurable disease. There is no shortage of people who think they are miracle workers or people who see easy money. I wish it wasn’t true but it is. I sort of fell under the spell of the former for a little while myself. I always research what people report as having helped them but given that the disease is still a bit of a mystery, it’s all a ‘crap shoot’ to some extent. I will say this, it can and does get better. It doesn’t stay like this. So don’t give up!

  7. BevJune 12, 2012 at 11:40 am #

    Don’t despair, Gill, even tho it’s difficult not to. Eventually every flare comes to an end! I can promise you that. You just have to find the right thing that works for YOU. UC is unique to each one of yus, and it really does come down to trial and error.

    First off, please don’t stop taking a good probiotic. I went into the vitamin store when I was in a flare, told them that I had UC, and I took what they recommended to me. It took two months to see any improvement, but I do highly suggest that you only try one thing at a time. Give the probiotic time to work. It does not happen overnight, like steroids. It takes much longer.

    Cheers, and stay positive,
    Bev:)

  8. AnnetteJuly 8, 2012 at 3:23 pm #

    Hi Gill and everyone who replied to her, I got diagnosed with UC last April and despite taking 8 Pentasa daily, plus using enemas/supposetries, i also have constant symptoms including blood and toilet frequency. I feel I have had no symptom free time and it all feels too much sometimes. I also have an enlarged stomach which makes me look pregnant which my Dr puts down to IBS – but it’s permanently massive. I have tried the SCD diet and to avoid dairy, wheat etc but to no avail and I don’t understand why I don’t ever lose weight! I have never met anyone else with UC and feel I’m just fighting a losing battle which will inevitably result in surgery.
    I’m 45 with 3 children and would desperately love to hear from anyone who has any suggestions.
    Thanks
    Annette

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