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Posted 11/16/2010 2:22 AM (GMT 0)
How are you feeling? Last time I saw you you weren't too well...
Posted 11/16/2010 11:21 PM (GMT 0)
Hi Ivy! Lovely to hear from you…   I’m doing ok; work is getting very busy, and I do wonder whether my latest health issues are attributed to the fact that I have been very stressed out and exhausted of late…   Maybe it’s a chicken / egg situation…   Today I have decided to stay off solids. I do feel a bit as if I’m either:   a) Constipated, don’t go for days, and every time I eat I feel as if I am just ‘filling up’ and nothing is moving along as it should, I end up feeling uncomfortable… as soon as I eat I feel so full and a bit nauseas… OR b) I take psyllium husk or a gentle senna laxative, and then I go again, and again, and again, getting up at night, and then running to the bathroom at work… because there is so much there to expel, OR c) I get extreme cramps from the psyllium/laxative – or d) I do as I am doing today – don’t eat (or eat very minimally, just hard cheese and honey etc), wake up feeling great the first day after not eating (or not eating much) because I’ve finally slept soundly, my tummy is empty (is it just me or is the empty tummy feeling the only time when it feels good?   It’s a weird situation – my crohn’s has not felt like this before, I am getting a bit fed up with always having it in the back of my mind – so today I am going to eat minimally and see how I go – at least that way I wont feel bloated and pregnant! I’m not losing any weight so it should be ok – but I do have a big day ahead of me tomorrow, 8am-8pm today because we have a media preview and then an exhibition opening, and I am the only media contact…   Working Saturday for a few hours too..   I just put one foot in front of the other and move forward, try not to over-think my tummy, not to make a psychological obstacle out of it, because it’s already a physical one…   I am very blessed in so many ways, but I don’t really know what to make of my current situation. Last time I contacted my GI via email, he said it sounded like routine constipation (which it probably is, but sometimes BMs come out in strings/ribbons) – and then there’s the issue of the 6MP and my phobia, extreme fear of it…   Bah!   How are you , lovely Ivy?      P
Posted 11/17/2010 3:17 PM (GMT 0)
Hey Phoebe,

Have you tried taking stool softners when you get slow like that. I take them nightly in order to keep things softer and easier to pass. If I get constipated it makes me feel that full and nauseous feeling too. But by taking the stool softners nightly I seem to be avoiding that. Hope that helps a little.

Hugs
Gail*Nanners*
Posted 11/17/2010 11:58 PM (GMT 0)
Hi nanners,

I've tried the stool softeners, but maybe I'm taking too much because they just seem to bloat me and make me uncomfortable, and then I go to the bathroom too many times!!

I think I'm feeling a bit fed up with having to think about it all the time, so I'm eating minimally for a few days... lots of water and the occasional yoghurt or peanut butter - work is chaos so I guess that takes my mind off eating!
Posted 11/18/2010 8:24 AM (GMT 0)
Phoebe, when do you get to see your magic doctor again? Things don't sound right there...

It's like you've gone from one extreme to the other, isn't it?
Posted 11/18/2010 8:26 AM (GMT 0)
ps. I'm doing ok, thanks. Am very fatigued, which is pretty hard to cope with, but I'm hoping to spend much of tomorrow lolling and sleeping and reading, in the hopes of getting back on top of it, and the associated pain.

This is the first chance I'll have had for a while, as I've had a busy week and have another busy week ahead.
Posted 11/18/2010 5:04 PM (GMT 0)
Hi Pheobe! Your symptoms are exactly like mine. I'm either backed up or like a human toothpaste tube that never goes empty. I use mirilax when I get backed up. It takes about a day to work but it is very gentle with no cramping or bloating ( we are already bloated enough). And yes the stress can be a big factor. Before I was diagnosed I ran the statement department of a banking chain. Fast paced, high stress. I thought my job was making me sick so I quit. Turned out to be the crohns but I know all the stress was making it so much worse. I understand and I hope you feel better soon!
Posted 11/19/2010 2:54 AM (GMT 0)
btw, if you have a stricture you might like to be careful with the psyllium husk etc. All it takes is for a little bit to catch to get you into further trouble, according to my doc.
Posted 11/19/2010 3:42 AM (GMT 0)
I'm not due to see my doc until the end of January... I wonder though, could I have a stricture if my scope came out 'all clear, no stricture?' - could it be higher up? My GI seemed unconcerned about any strictures...

Adhesions possibly? I don't know...

I'm staying clear of the psyllium for now :)
Posted 11/21/2010 1:52 AM (GMT 0)
Debbikay, I'm curious because you say your symptoms sound just like mine; did you receive a diagnosis of what was causing those symptoms?

My crohn's symptoms have been pretty good this week. Just replaced by tiredness and dizzy spells due to some major food avoidance issues... Sad sometimes the lengths we will go to in order to not feel bugged by our insides ..
Posted 11/21/2010 2:47 AM (GMT 0)
Phoebe, have you found a gp yet?

I really think it would be a good idea if you could see someone face-to-face, instead of just talking over the phone. It's a long time until the end of January, and you don't want to be doing this through Christmas and the summer hols, while all the docs are on leave.

My advice would be to find someone now... this week, if possible... and get in to see them as soon as you can.

Ivy.
Posted 11/21/2010 4:07 AM (GMT 0)
Just replaced by tiredness and dizzy spells due to some major food avoidance issues... Sad sometimes the lengths we will go to in order to not feel bugged by our insides ..

Yeah, I can relate to that...

I've been eating sparsely for ages now, I'm so fed up with the symptoms from eating. The less I eat, the better my guts feel. The more I eat the worse I feel: bloated stomach, intestines which feel sore and distended, a feeling of nothing moving for hours then obnoxious rumbles, constant gut pain, low-grade fevers, severe lethargy, depression. If it was just a couple of hours a day then fair enough, but it goes on for hours and hours.

I'd rather eat less than go through that day after day, with no respite =/

I can't help, but at least one other person knows where you are coming from. And although I'm not suffering from constipation at the moment, I fully understand that particular misery :-/
Posted 11/21/2010 4:14 AM (GMT 0)
Hi Pheobe! I have crohns colitis aka granulomatous colitis. I have some disease in the ascending colon but the worst is in the recto-sigmoid area. None in the small intestine. No one said why mine is the way it is. I was diagnosed Dec, 2007 and was on asacol for 6 months and it did'nt really help. Then I lost my GI doc shortly after diagnosis because he no longer took my insurance (low income medical through the state). I just found a new GI so it has been over two years since I have had any treatment. I am having another colonoscopy on Dec 2nd. The new GI doc says that he will probably put me on remacade after colonoscopy. I personally feel that when you have crohns in the colon vs small bowel, you tend to get constipated more than D. Its miserable either way. I dont avoid food, I am over weight and I still have fatigue and dizziness alot. I think it is all part of this disease. It is systemic, not just bowels but entire system is affected. Reumatologist says I also have spine and hip damage because of it. I fear what they will find in my colonoscopy after 2 and a half years of no treatment. I agree with Ivy, you might want to see a doctor sooner. I wish I could have. I hope you feel better for the holidays.
Posted 11/21/2010 7:24 AM (GMT 0)
Ahh thanks guys.
Funny thing is, with crohn's colitis, my main symptom was D - for four years, constantly, getting up five times a night etc, which lead to abscess problems and all kinds of complications and surgery. D for destructive! This is a big change, and nicecupoftea, it's so nice to hear someone completely understanding where I'm at. I'm not doing it as punishment, I'm doing it for practical reasons; I eat one (so called) 'good' meal, and the rumbling, distension and discomfort goes on for the rest of the day, into the next - if it lasted an hour or two I would put up with it. 

Eating sparsly gives me a taste for what it feels like to be a normal person, without crohn's bugs running around causing me grief. I eat yoghurt and honey and sparse foods for energy. I don't plan on doing this forever, I guess this week I'll have to eat normally...

There is a gp down the road, but I just know if I describe my issues, he will refer me to my specialist. And I'm not sure what to say to my GI... general constant discomfort? Constant gas, bubbling, pain  and hard lumps every so often? Sounds very vague... I don't know, I guess we're just accustomed to living with these symptoms, but I don't see what he could possibly suggest I do, apart from taking 6MP, which I'm petrified of. So many threads on here express people's concern at remicade; when 6MP to me is the scary one...
Posted 11/21/2010 8:05 AM (GMT 0)
No, it doesn't sound "very vague" to me, Phoebe. It sounds symptomatic.

Please, go to see a gp. This is a dramatic change in symptoms for you, and I honestly think you shouldn't be ignoring them.

You should know by now: you don't muck around with Crohn's. My feeling is that it's better to "waste" time at a gp or specialist appointment than to risk serious complications and serious time in hospital.
Posted 11/21/2010 1:33 PM (GMT 0)
Phoebe, your description of things sounds exactly like me! I'm sorry that you're feeling bad, and I hope that you will find some relief soon - I agree with ivy and others that your Crohn's is needing some attention.

I am just coming out of a 6 month flare and I cannot tell you what made the difference except 2 things that changed - I changed my timing of meds so that now I am certain to be taking 3g of Pentasa/day, and my life stress went down significantly (we had a house fire/rebuild/move that just wrecked about 18 months of our lives).

Another med I've tried in the past to address some of the problems you describe is Entocort. I took it primarily to relieve arthralgia pain in my hands/wrists, but it did tamp down the disease quite a bit. It is pretty expensive, so I only stayed on it for 6 months, adding in sulfasalazine to keep the arthralgia at bay.

At my lowest point this summer and fall I found that by the end of the day I was exhausted, head-achy and miserable. After noticing that I felt much better after eating (until my belly started complaining) it occurred to me that I just was not getting enough calories. I think there were about 3 months where I never felt hungry, but I still managed to only lose about 5 lb, because I essentially forced the food down. But I did see myself changing my food choices - I stayed away from gluten and dairy and fresh veggies. It wasn't a conscious choice for the most part, but I was happier leaving those foods out. Recently I've started putting some of my old favorites back and I'm doing ok.
Posted 11/21/2010 10:47 PM (GMT 0)
I agree with the others: a change in symptoms is worthy of investigation.

Phoebe - You sound similar to me, except for your Crohn's being obviously more severe than mine. (Ivy directed me to your posts to try to inspire me to look for a decent GI, so that's how I know...) I've got Crohn's colitis (albeit with some small bowel disease as well), my main symptom for years was diarrhoea, and I have had the shift in symptoms that you are having.

Unfortunately I don't really know what caused the shift. I suspected strictures, but even after a colonoscopy and MRI scan I still don't know. It's mad frustrating to get these tests and then not even find out what's going on. The info given out is vague and contradictory, even if you ask. I hate all the gastro doctors I have ever seen. Put this way, I don't think I have any severe strictures, otherwise I'd probably have had a few obstructions by now. But I must have narrowing of the bowel somewhere, because my previous doc was frightened of giving me Remicade in case it made the narrowing worse. (At least that was her excuse.)

I'm a bit hesitant to say this, given what you said about it, but I did go on 6MP. Twice. The first time was in the early summer of 2009. It may have been coincidence, but the summer of that year was when my symptoms began to change. At first it seemed like a positive change and for a week or two I thought I was heading for remission! Heady stuff. But then the constipation, abdominal pain, etc. began to appear and I felt more miserable about the Crohn's than ever. I also had low-grade fevers even while being on 6MP. In January '10 I was so fed up with it I stopped it. Had a colonoscopy in spring, after which my doctor put me on Entocort and 6MP. I quibbled about going back on 6MP, but I agreed to do it after the doc told me that the Crohn's would kill me if I didn't take anything for it.

Fast forward to a few weeks ago. A different doc, didn't like him. I walked out of that office extremely upset at first and then later on extremely angry. And I stopped the 6MP. Probably not the greatest idea ever, but I didn't care. I still don't care, in all honesty. It's not like it was making my symptoms any better.

Obviously, I'm not exactly in the best position to give encouraging noises about 6MP! But please don't let my experience put you off. I seem to only have two responses to drugs: bad ones or unresponsive ones. 6MP does help some people, no doubt about it. There is a test you can get done to determine if you are at risk of developing severe side-effects from 6MP or azathioprine - it's called the TPMT test. If you are scared of a serious reaction, that would be the test to take I reckon.
Posted 11/22/2010 1:59 AM (GMT 0)
Nicecupoftea and Kazbern, thanks so much for your responses, its nice to know the background of others in a similar situation. I'm at work at the moment but I've left a voicemail message with my specialist's nurse.

I was prompted to go back and read some of my previous threads - there was one there written at the beginning of the abscess saga, and another during the mushroom drain times... waiting for remicade...

I'd be interested to see if I could get the sensitivity test; I wonder if my GI has ordered it already amongst the others he runs for me every 12 weeks...

Pretty tired today!
Posted 11/22/2010 2:11 AM (GMT 0)
Good. I'm glad you've rung the nurse, Phoebe.

But I still think you need to find a gp, and soon. Really, at the very least, people with our type of Crohn's need a three-pronged approach:

* gastro
* surgeon
* gp

but, ideally, with other support staff as well. You're running with less ammunition than you need, dear Phoebe, and you owe it to yourself to get more.

(I'm good at nagging, aren't I? :-) )

Ivy.
Posted 11/22/2010 2:11 AM (GMT 0)
ps. 'cos nurses can be good, but ultimately, they're not doctors, and this sounds like a doctor problem to me.
Posted 11/22/2010 2:20 AM (GMT 0)
Yes, most of the time I call the nurse and she jots down symptoms but doesn't really know what to suggest, which is fair enough, that's not her job afterall... She then relays it to the specialist...

I do have a fabulous surgeon! (Let's hope I never need him again)!

You're a very good Crohn'sMum, Ivy :)

Hopefully the nurse gets back to me, I'm really tired today, I wasn't much at all last week.
Posted 11/22/2010 2:24 AM (GMT 0)
Really, you need a gp.

Who do you talk to when you develop a temperature? Or when you get a fungal infection because of being immunosuppressed? Or when you get aches and pains or depression or any other IBD complication and need some extra support? Or if you need immediate attention and your gastro doc is away? Or if you need a referral to allied health or another specialist?

You need a regular gp; one who knows you and who can support you long-term; not just a doc you drop in to see when you need one. It's all about setting up adequate and long-term support for yourself.

Nag nag :-)
Posted 11/22/2010 2:28 AM (GMT 0)
ewww fungal infection!?!?! ahhhhh!!

You're right though; I do need to find a decent Dr for all of those things, its just hard because I work full-time; guess I should just look for someone in the CBD so I could walk over in my break or something

Posted 11/22/2010 4:43 AM (GMT 0)
Yes, fungal infections. Just you wait, kiddo :-). You've yet to experience the fun, by the sounds of it.

Have you seen those farm health posters that they have in gp offices (silly me; of course you haven't! LOL): better to spend fifteen minutes looking after your health now, than to have to take fifteen days or fifteen weeks later...

Please do find a gp. Remember, some operate after hours or on the weekends too. And it would be good if you could find a good one, not just your local bulk billing clinic that has the new graduates that flit through every few months, leaving you no time to build a relationship with them.
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