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Second flare up since being diagnosed!

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Ulcerative Colitis
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Posted 9/29/2012 9:27 PM (GMT 0)
Hello everyone,

I'm new to this site, read a lot of posts in the past but never had a go myself. Here goes, I'm a 22 year old female who was diagnosed last year with Ulcerative Colitis after many months of ignoring my bowel habits. Being young and having just started university and thinking I was invincible I let the illness get so on top of me that eventually, when I ended up being taken to A&E by my concerned brother I ended up being an inpatient for 6 weeks on IV steroids 100ml hydrocortisone a day, 4.8g mesalazine and pentasa enemas. I was also started on azathioprine. Being in hospital so long I also contracted c-diff. I was lucky to avoid surgery, my bowel was very damaged after going so long with no treatment. I was also on vancomycin for the c-diff. Although the flare took a long time to control by the time I left hospital I was in remission and I thought I was back to 'normal'. I left hospital on 40mg of prednisolone and I tapered off my prednisolone 5mg a week without any hiccups at all. Once I finished the steroids without any symptoms returning I went into a massive denial about having UC and thought it could have been c-diff the entire time. I hated being on medication and so, stupidly I stopped taking everything. No more maintenance drugs: azathioprine or mesalazine.

A year passed without any meds or symptoms returning and I was convinced it was a misdiagnosis. Anyway, at the beginning of this month after a period of massive stress, I noticed mucus in my stool, then the following day blood... The next day I went to the Dr and was put back on prednisolone 40mg which I took for 2 weeks. I was also started of mesalazine 3.6g daily and pentasa enemas again a week after starting the steroids. After 2 weeks on the steroids the blood stopped and my GI doctor said I could start tapering down the pred to 30mg for a week and then decrease 5mg a week after until I reached 0. I took the 30mg for a week and now right at the end of the week when I'm supposed to be going down to 25mg tomorrow the blood, mucus and pain is suddenly back!

I'm so upset I feel like I have just found out I have this disease as I was in denial for the last year as I was completely well. I have increased my dose back to 40mg pred. My question is, is it common to have problems tapering off prednisolone? Am I steroid dependent? Will I need to go back on azathiprine? I came off prednisolone fine after my first flare so I don't understand why my body can't cope now with anything less than 40mg at the moment. I'm struggling to accept I have this disease, and would really appreciate some advice. I hate being in pain and I don't have a supportive family to turn to. I feel alone. I also don't know how to explain the disease to my boyfriend, we have been going out for over a year and a half and at the time I was diagnosed I lied about why I was in hospital because I found the disease totally embarrassing. I told him I only had c-diff, a curable infection. I don't know how to explain I have a lifelong condition without totally putting him off. I mean as soon as he googles ulcerative colitis he'll see "diarrhoea" "blood" "mucus" and "stoma". I'm sorry I'm really struggling to cope, would love know how others have handled this disease.

Many thanks
Xxxx
Posted 9/29/2012 10:25 PM (GMT 0)
I'm not going to go into advice on your UC right now but I think you need to come clean with the boyfriend. I'm willing to bet he is concerned and will handle it OK. It sounds like you really need him right now. Also, the longer you put off telling him the truth the harder it will be later and the harder it will be on your relationship. The longer he thinks you lied to him the better chances are that he thinks about dumping you. Right now you can just pass it off as you really believed it was all just the c-diff, which is basically the truth.
Posted 9/29/2012 10:50 PM (GMT 0)
Sorry to hear about your flare up. They can be very difficult to cope with sometimes, both physically and emotionally. It is very common to have symptoms re-emerge while tapering off prednisone. You should discuss this with your GI and decide what the next course of action is.

You should tell your boyfriend as soon as possible. It can be very difficult and may seem embarrassing at first, but in the long run it's much better to keep loved ones in the loop. Having people in your life that at least have some idea what you're going through is invaluable. At a year and a half I would expect a good relationship to be more than strong enough to get through this. Personally I'm very upfront with my friends and family about my disease; not necessarily with the nitty-gritty of my symptoms, but at least regarding my general well-being and the status of my disease.
Posted 9/29/2012 11:23 PM (GMT 0)
You may not be giving your boyfriend enough credit. If he loves you, he will be supportive. You should come clean to him. If he isn't, better to know now. This disease is awful, but it can be controlled in most people, that is why you have to stay on your maintenance meds. IMO-you went into remission after being in the hospital for a while on all kinds of meds. This flare may take you a bit to get it under control. Some people do have trouble coming off of prednisone. You may have to do it much slower. Don't stress about the what ifs. I doubt your are steroid dependant, and this may be a case of trial and error on the meds. You may have to try a couple before one really works for you. Just try not to get too overwhelmed.....take it one step at a time. And as for support, you have us.
Posted 9/29/2012 11:28 PM (GMT 0)
The first time I was on pred it worked great. The second time not so well. I still tapered down even though I was seeing symptoms. Had to get off it. I just kept using my Rowasa enemas nightly and used the max of my Lialda which is 4.8 grams and eventually the flare went away. Now the minute I see symtoms I up my enemas back to nightly and max out the Lialda.

BTW, tell the boyfriend. He knows something is up I'm sure and if he loves you then he will stick by you. Sure it may be a shock but you know you didn't ask for this. Good luck.
Posted 9/29/2012 11:43 PM (GMT 0)
Hey there, I was also officially diagnosed about a year ago as I ignored the symptoms years before and convinced myself there was nothing wrong. Being only 18 and newly diagnosed I understand how you feel as ive just got out of hospital due to a nasty flare up that left me dangerously aneamic and very ill.
When I was first put on steroids, I was put on 40mg but only for five days, the symptoms died down but once I started tapering quite quickly, they came back. The second time I was put on steroids I was put on 40mg for two weeks, and it took these full two weeks to see a change then once I started tapering 5mg every 5 days I still saw improvements. Maybe you need to be on a higher dose for longer? Talk to your doctor and explain that your symptoms arent improving. You may not be steroid dependent it may just take longer for the steroids to get everything under control. As for accepting you have the disease, just remember once controlled UC can be a disease where you dont experience any symptoms as you know. So its important to get it under control and the sooner you accept you have the disease the easier this will be, so stay strong :) I know its hard to accept that its with you for life but think of it as one of lifes challanges which you will beat :) Try not to stress about it as this will only make it worse, as you may or may not know stress can be a contributing factor to your flare ups as well as alcohol and sugary foods, so if youre flaring badly try to cut these out of your diet, along with fizzy drinks (I find this helps).

As for your boyfriend, you should really tell him, with him knowing your life would be much more stress free. Im sure he will understand and if he doesnt then would you really want to be with someone like that?

Stay strong x
Posted 9/30/2012 1:17 AM (GMT 0)
Ur new to UC and that scary. You will learn there are many ways to get "remission" and it won't be so bad. My 2nd time with pred took much longer to work on flare. Things can take awhile to get back in control. Hang in there.
Posted 9/30/2012 1:31 AM (GMT 0)
I know I went through denial as well. Especially once in remission, for 3 years I took my meds "in case" but I refused to believe I would have this for the rest of my life. I would tell people (close to me) that "The doctor diagnosed UC" but I refused to say I HAD uc. I felt fine. Life was normal other than taking the mesalamine pills.

When 2nd flare struck! That was hard... not so much physically (although that was very unpleasant) but it was like a punch in the gut that I had to stop fooling myself, I would be dealing with UC for a very very long time. It is hard to accept. But as you've seen on here if you've been lurking for a while, many of us still lead very full, productive lives. UC has changed my life but it has not controlled my life. I do things differently - like get up 2hrs before work, carry an 'emergency bag' in the trunk, never book AM flights, ensure I have prescriptions before travels etc. But I have not let it stop me from doing anything I want to do.

Flares really are different from one person to the other and how long you will be in this one - nobody knows. Hopefully you can find something that controls your symptoms and gets you back into remission soon. Know that you are definitely not alone and you will have good days again.

Take care and be patient with your body. Give yourself permission to feel crappy for a while. And then find ways to work around your colitis to do what you want to do.

Best of luck.
Posted 9/30/2012 3:17 AM (GMT 0)
Thank you so much for all your lovely replies. You won't believe how much better they have made me feel and how reassuring it is to get advice from people who understand what I'm going through both emotionally and physically. It's such a relief to hear that others have experienced the same problems with prednisolone tapering, I will talk to my GI on Monday until then I have upped the pred back to 40mg and will start my pentasa enemas again. I think I need to learn to be a bit more patient, not used to having a disease which takes si ling to 'go away'. But from all the kind things you have said, I am co.fident now that if I stay strong it WILL not be bad forever, and I will not let it stop me doing the things I want to do. I'm so glad I have the forum for support as you guys know exactly what its like and how unfair this illness is.

May I ask if when you flare you don't want to eat? I've gotten soo scared of food, I've always been very slim I'm 5 foot 8 and usually weigh around 9 and a half stone, but I usually eat lots!. But since this flare started at the beginning of September I haven't much at all due to fear, I'm getting pretty sickly thin at the moment through restricting my eating massively and was shocked when I went to my GI last week and weighed in at 8 and a half stone. Deep down I know not eating is obviously not good for me as I need fuel to fight this battle. But then I just imagine the pain of when the food eventually passes through my bowels and I can't hack eating. Also being on pred again I'm so worried about my moon face, I've lost maybe a stone this last month so even if I have started getting the moon face you can't notice. I would like to know what and if others eat during flares? How to eat over fear if eating and eventually passing bms?

It's frustrating as I work as a receptionist in a hospital at the moment and am due to go back to uni at the beginning of November. Obviously now I'm flaring, working on a reception desk is a nightmare as when I need to 'go' I have to find cover or run away from my job and leave it
Unnattended. Had a very panicky moment the other week where I had to literally run to the loo, where it was soo painful I was in tears to my twin brother on the phone at work and couldn't get back to reception for 10 minutes. You can imagine the crowd that had gathered on my absence including my boss. I have told her about the disease as I needed a few days off with it when it got particularly bad at the beginning of the month, but is still awkward. Who what's to talk to stranger about bowel habits right?!?

Thank you sooo much for the boyfriend advice, so reassuring to get your insights. I am seeing my boyfriend later today so I will fess up then, you are right that it will relieve a massive stress telling him. And after a year and a half he should support me I shouldn't hide something big like this and suffer quietly. A problem shared is halved :) He is a lovely, kind man. And its worth knowing sooner rather than later whether he can accept this. If he doesn't want to know then sadly I will have to accept that he isn't worth knowing! I will let you guys know what happens! Just wish the name for the disease wasn't quite so...grim...

Thanks again, can finally imagine the light at the end of the tunnel!

S
Xxx
Posted 9/30/2012 11:40 AM (GMT 0)
Hey again :) Sometimes when I flare I am afraid to eat because im scared it will irritate my bowel as its extra sensitive whilst flaring so I usually waited until I was at home and near a private toilet because it put my mind at rest. However I understand this may not be possible if your at work, but I know how you feel I work in a shop on till and have had to rush to the toilet a couple of times, its not an ideal situation but it will get better! I dont think my work fully understand the nature of this disease which can be frustrating but if you need time of work whilst you recover from your flare I suggest you take it to minimize the stress.
At the moment ive been avoiding fizzy drinks and I dont know if its by coincidence or what but this has been helping, ive always had a sweet tooth and cutting out sugary foods completely has been hard so instead ive just cut back the amount. I would also avoid fatty foods (deep fried) and fast food restaurants. However everyone is differant and its a matter of trial and error to work out what irritates you. Once you stop flaring you should be okay to start eating what you want again, just be careful as some studies have suggested that people who eat more sugary foods and drink more alcohol are more likely to relapse. Its important to eat to keep your strength up, I ate a lot of spinach as it was rich in iron and I was quite aneamic at the time, make sure you drink plenty of water as this also helps! Try eating soup as this can be quite soothing, stick to plain foods for now like plain chicken and rice.
Good luck! Let me know how it goes!
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