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Ulcerative Colitis
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Posted 1/1/2008 2:15 PM (GMT 0)
Does anyone out there have ulcerative colitis and irritable bowel syndrome ?? I was diadnosed with UC nearly 3 years ago, and have been fairly lucky to have had my symptoms controlled by mesalazine. My GI specialist is not very helpful and is adamant that UC is not brought on by stress.However i'm not convinced abut this.

 Over the past few weeks I thought I was going into a flare, but this was definitely after a very stressful period at work. My symptoms have been some urgency, lots of gas, sometimes loose stools (but not always) but no blood. My GP says  could have both IBD and IBS but i'm confused by all this. I am reluctant to go to see my specialist as I think he will start me on steroids and i don't want that. Last week I started using daily mesalazine enemas and Predfoam as well.

can anyone advise me ???

Thanks !!!!

Posted 1/1/2008 3:09 PM (GMT 0)
I have had both IBS and UC for 24 years. When the UC is in remission the IBS is still active..bloating, constipation, gas. Stress and hormone fluctuations affect my symptoms and will exacerbate a UC flare already in progress. I am currently in a major flare of both. I am using Rowasa 2bid and reducing prednisone by 5 mg every 6th day from a small starter dose of 20mg. I am juicing, not eating any processed foods except for Brown Cow yogurt and pureeing soups for dinner with a small side of either chicken or fish. I find that this really allows my colon to rest. I tolerate most of the veggies in cooked pureed form but don't use the skins for cucumbers when juicing....mostly use carrots, beets, celery, apples with a little ginger thrown in. My GI says that 40% of people with UC have IBS. He also says that if UC is in flare the IBS symptoms tend to worsen and that stres does intensify IBS which can irritate the UC. The bottom line is you have to trust your instincts about your body and find a GI you have a good rapport with. THis is a life long condition and it is important to feel a partnership with your doc.
I hope the New Year brings you health.
Posted 1/1/2008 3:20 PM (GMT 0)

Thanks for replying. I am in the UK, and am tied by our health service as to who I see, unless I pay to see someone privately.

I found it interesting that you think hormones have an effect as sometimes my symptoms are worse around the time of my period, but again my GI didn't think this was significant.I also wonder if i am approaching the menopause and wonder what effect this may have on things.

You say that in July 2007 you had a new flare with symptoms you had never seen before................what were they ?

Its good to know that I may well be having IBS symptoms instead of a flare of the UC. I think the thing that made me wonder was that there was no blood this time.Can I ask you how you get on with the steroid treatment ? I am very anxious about having to take them perhaps in the future , because of the side effects and also because I hear of people having problems trying to come off them, when their symptoms come back again.

Posted 1/1/2008 5:41 PM (GMT 0)
Hormones are definitely an issue for me. I have been in remission for years, have irregular periods and can always tell when I am going to start my period because I'll get a slight UC flare.....dips in estrogen seem to trigger, hence onset of menopause is bringing new symptoms. The July flare started with my intense upper GI pain, my vocal chord swelling and shutting down and hemoroids the size of manhattan which reqd removal. I am a psychotherapist so the first thing I did was head to an ENT to deal with not being able to speak. He told me extreme acid reflux had swelled the vocal chords shut and out me on Prevacid 2bid. I then headed off to the GI for an ultrasound looking for gallbladder issues....none. The pain worsened and new symptoms deveoped......extreme thirst, no appetite, bloating the size of a swallowed beachball, painful joints....the big 6 with the addition of my left pointer finger which I couldn't fully bend or straighten. I was leaking, having very little loose movements with blood and mucous but otherwise totally, uncomfortably constipated even using Miralax multiple times per day. In November I was hospitalized with fever of 103 and the fever has come and gone for the last month....the days leading up to Christams I was up to 104.5 spiking 4 or 5 times a day. I was scoped the week beore and had a clean biopsy but was told I was having extremely active colitis....news to me since I hadn't seen blood or stool in 3 weeks.

Prednisone gave me a severe case of osteoporosis. I was taking it in high doses in my early 20's and it zapped the calcium right out of me. I take Boniva infusion.....I can't swallow pills, so everything I take is meltable, injectable or inserted. I also used to get the facial mooning, body hair growth, oily hair as side effects. It does seem to get my symptoms under control. The low dose makes a huge difference in side effects. It has been soooo long since I've had to manage an attack this way that I don't know what will happen when I am off the steroids this time. I am considering another stint on Methatrexate which is what put me in to the multiple year remission last time. The downside with that drug is that I got every virus floating around while I was on it and for 4 months after getting off it. I never get colds or any other kind of usual illnesses but that year I was sick with everything. Looking back it was a small price to pay for so many years of freedom form UC.....I am never free from IBS but what's a little gas among friends? Hope this helps somewhat
Posted 1/1/2008 5:51 PM (GMT 0)

I was interested to hear that you are a psychotherapist. I am a psychiatric nurse here in the Uk and manage a ward for patients with Alzheimers.Does being a psychotherapist help you deal with the emotional effects of having UC ? I'm afraid that being a nurse hasn't really given me much of an advantage.....I still worry about it !

it sounds like you have really been through it recently.....................how on earth do you cope ?

Posted 1/1/2008 6:49 PM (GMT 0)
Probably comes in handy being a psychotherapist whenit comes to coping with this horrid disease LOL!

I ditto what texasyankee said in the first reply...and my hormonal changes definitely have an impact on how my crohns-colitis and IBS are affected as well.

:)
Posted 1/1/2008 6:52 PM (GMT 0)
Hi Supernurse....one thing you need to understand..you don't have to go on pred.

Not all of us bleed with flares...eventually, you can treat them earlier and earlier to avoid the bleeding. Remember, inflammation is a process, the only reason you'll bleed is if the tissues are in a state of severe fragility. Hormones would definitely affect that as would steroid enemas.

It's a fine line of distinction.

I don't understand why you're on both steroid and 5ASA enemas....

Definitely hormone fluctuations will have a huge influence on UC. It did before I had a hysterectomy in '93. I did stop bleeding with flares prior to that because of treating flares earlier and earlier with symptoms....but, this year when I decided to go off the estrogen patch, it was interesting that the bleeding returned with a flare. Shocked the heck out of me...but it did take a few months for my body to be depleated of estrogen. I must admit that the hot flashes/shivers/anxiety was extremely stressful and it took a while for me to figure out it was the lack of estrogen. Then the flare hit and the blood....interesting and humbling.

I have a question regarding what your expectations are for treating your flare.....the rectal meds should help get you back to feeling better if the 5ASA meds work well for you. It could take weeks of nightly use before you notice improvement...I suggest you let them do their thing. Remember that they must be tapered....down to every two nights for at least 2 weeks, then every 3 nights..etc. It's a continuing process, but that way, you'll be able to find a maintenance dosage.

I would suggest you not taper just before period time...

Try to get the threat of having to go on prednisone out of your thinking process. I think it may make you feel desperate to get rid of your symptoms quickly....but the consequences of being on pred can be worse than if you just stuck out using the 5ASA enemas (plus oral) and found a good schedule that can work for you.

It took me years to figure out how to use them effectively. 19 years later...I till use them plus Asacol...I've never had to be on pred.

UC isn't caused by stress....but it definitely has a hand in flares. I don't believe food is a cause. IBS symptoms are difficult to differentiate from UC...but mostly UC symptoms will continue and eventually get worse. Starting the rectal meds early such as when we recognise it's more than just food related or stress related IBS is a good way to prevent flares from getting worse.

Do make sure you eat well-balanced meals. You need proteins to help heal the body and keep blood sugars balanced. Not all foods need to be digested quickly, and you do need to remember to help get the rhythm of peristalsis back to more normal rather than in an irratic spasming fashion. Meds such as antispasmodics will help. I use dicyclomine. With IBS and IBD....gut spasming is the norm for many of us....and stress and some foods will exacerbate that.

Try to find what works for you. Don't be threatened by meds if you haven't yet worked on the basic meds. There is a scheduling process of tapering and increasing that will give you the freedom to deal with flares early and help keep things in check.

Do use antispasmodics....they do help.

Probiotics are great...although not all agree with everyone. I don't use any yogurt sources...waaaay too much discomfort, although, I'll have it on occasion.

Eat to keep your digestive tract exercised.....liquid diets and very low residue foods make the colon lazy. A day or two is OK, but in general, it's a work in progress to find what you can tolerate. Make sure you get enough proteins and the right fats...your body needs them.

OK...enough for now.....I hope you feel better soon.

quincy
Posted 1/1/2008 7:59 PM (GMT 0)

Thanks so much for your really useful reply ! What you say makes real sense. I suppose part of my problem is that I'm still kind of in denial about having this condition. I think when the symptoms start I do the worse thing by ignoring them and hoping they will just go away. I must get into this routine of starting the enemas earlier......its just not a pleasant thing to have to do, is it ? You think that as a nurse I would have more sense !I think I am also quite impatient with myself and almost expect the meds to work immediately.

I have found this forum so useful. One of the things that I would also find useful would be to have someone in the UK to chat to about this. I have made a wonderful friend in the USA through this forum, but find the support to be less in England. I cannot praise this forum enough....its helped me so much.

Posted 1/1/2008 9:34 PM (GMT 0)
Hi...you're welcome. Sometimes the process of dealing and expectations collide. If life didn't happen at the same time, it'd be so much easier, wouldn't it?

Being in denial only allows you to waste time and become more desperate....my experience anyway. Defintely been there.

I agree the enemas are an inconvenience.....but if they work for you, consider it insurance for the future. I dread the day that they stop working. The fact that you're not bleeding....BONUS!!

You're on both the 5ASA and steroid enemas. Your symptoms don't seem that they need that much medicating at this time.

I would suggest you just use the predfoam (like a boost..but to avoid the possible thinning of the tissue) maybe twice a week and the 5ASA nightly. If you use the 5ASA enema during the day, you might get more discomfort (heaviness and "feeling of something" in the lower colon....will give you maybe the urge to go...meaning you might be focussing on the discomfort).

Try not to feel helpless in your care. That leads to impatience and desperate decisions that could lead to meds you really don't need at this time.

Remember, UC is for life....pace yourself. I'm of the belief that once on pred, it screws up a lot of future use with 5ASA. Actually, I suspect any steroid use with 5ASA interferes somehow. No proof...just observation.
Of course, there are those who cannot use 5ASA, so steroid meds are next to use.

Do ask for dicyclomine or another type of antispasmodic to help with even the IBS.

Glad you're finding support from the forum...we all seem to offer different ideas based on our own experiences and research and "beliefs and theories". So, it can be confusing as to what to do sometimes. Experience will allow you to figure out what works and what doesn't, but really dealing with things at the earliest will give the best pay-off.

My doc responded a lot with "be patient...let the meds do their thing. 5ASA meds may take longer, but it's still the least possible side effects for long-term gain" .

If you can use them....do so.

Keep us posted as to how you're doing.

quincy
Posted 1/2/2008 3:11 AM (GMT 0)
Hey Supernurse, son't feel bad. Being a nurse makes this worse(bad rhyme) because we know too much!
I greatly dislike my GI but he is the best of the worst and we have many of the latter. The fact that any specialist
as you call him says stress doesn't play a role in ANY disease process is laughable and pathetic. Stress affects every
aspect of our lives and health. There is good stress and bad stress. Normal stress is necessary for us to function and
fight infections and deal with traffic. Bad stress is family, work, life, and traffic jams. I find that the higher my stress
the less disease I show until the stress is gone, then its as if a volcano erupted and it ALL comes out.
Nothing wrong with short term steroids but you will find that usually the highest doses work and tapering is a bear.
Good luck. I don't work as a psych nurse because my co-workers are plenty crazy enough for me(that was a joke guys don't get mad at me!)
Posted 1/2/2008 5:10 AM (GMT 0)
Sharann....yes, the calm AFTER the storm is what I find happens to me....amazing how the body is really able to deal when the mind is in another "place", but it can only handle so much.

q
Posted 1/2/2008 5:03 PM (GMT 0)
Sharann,

Thanks for your reply ! I have to say I don;t have a lot of respect for my GI because of his dismissive attitude. I believe in treating everyone as an individual and respecting the fact that  nobody knows your body better than yourself.My husband keeps telling me to try and find another GI but i kind of think...better the devil you know !! Knowing my luck I would find another one who was awful and then wouldn't be able to go back to doctor no 1 !

With regards to the Pentasa enemas he told me I need only try and retain them for about 10 mins ? What have other people been told about that ? there's nothing on the info leaflet that came with them. I find them difficult to retain for long but can normally manage 30-60mins.

As for your co-workers being crazy you want to try and work with my lot ! The patients on my ward are nothing compared to the staff !What kind of nursing do you do ?

Lynn

 

Posted 1/2/2008 10:59 PM (GMT 0)
I'm also a nurse, but it hasn't really helped me - well, perhaps it's saved me a lot of money because I don't fall for every miracle "cure" that comes by. I work with preschoolers, and you don't see a lot of UC in that age group, so I had no experience with it until I got it myself.

I think another advantage, though, is that I could deal a little better with the doctors from the beginning. We have to know how to manipulate them a bit, don't we? I did fire my first GI because he just didn't give a darn, but the one I have now is great. He really stressed over getting me into remission when it took so long.
Posted 1/3/2008 3:30 AM (GMT 0)
Fellow nurses.
I work in the recovery room in a hospital and the staff and physicians, especially the anesthesiologists and surgeons are nuts!
I have seen the types of GI docs who work in GI LAB and I cannot believe how bad they are. Mine is dismissive and sort of cool but he
does feel strongly about no steoids. The problem is he doesn't believe me when I tell him about past side effects. When I told him I got pancreatitis on Asacol he said "you must mean Imuran or 6MP". I said, no I know the difference. The Imuran just mad me vomit constantly within 10 minutes of ingestion.

oh well. We shall see.
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