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g'day phoebe...

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Crohn's Disease
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Posted 8/9/2009 9:11 AM (GMT 0)
How are you holding up there? How's your bleeding and pain?
Posted 8/10/2009 12:21 AM (GMT 0)
Hi Ivy! I had a feeling I had to come and check out the forum today!

I’m actually feeling a lot better than I was last week….. I was feeling so drained and exhausted a few days after my bleeding I was really dragging myself into work and back home again. I hadn’t felt like that in a long while and after my iron infusions it was a bit scary to feel like that again. I just hope that all that bleeding didn’t ‘undo’ the iron’s hard work!

I’m not bleeding at the moment, it stopped about mid-week last week, but I still have a lot of pain which comes out of nowhere (in my bottom) – a stabbing, sharp pain….. I will tell my specialist about it tomorrow. Can’t wait to hear whether I qualify for remicade…..

I think there might still be bleeding but it is smaller than it was before…. Sometimes I see it on the loo paper but nothing like it was when it was gushing. I will be interested to see what the specialist thinks that amount of bleeding could be.

Other than that I’m just looking forward to getting a remi infusion (hope I qualify!) because then I can look forward to having my drain removed (! ! !) a normal bottom! I don’t dare to dream of it!
Posted 8/10/2009 12:26 AM (GMT 0)
Wow, Phoebe, is it three months already?

Good luck at your appointment - we'll keep things crossed for you :-).

I'm glad to hear that the bleeding is diminishing. That must be reassuring...
Posted 8/10/2009 1:16 AM (GMT 0)
It definitely is reassuring…. But it is a bit scary that it happened in the first place, I’ve never experienced that ‘gushing’ before. I will definitely ask about it. It may just be a hemmie-gone-bad that burst or something, but it was a lot of blood and that is never a good thing.   I KNOW! I can’t believe it! I remember hearing about the 12 weeks of waiting and thinking it would go forever! And having the tube in my butt for that long, the thought of it made me so down, and now the 12 weeks is nearly up (and I have since trimmed the drain!)! I don’t want to get my hopes up because it might take longer than that, but the specialist team wanted to see me before Dr Radford goes overseas. He will leave me with another Dr that he works with while he is gone, but he was determined to see me before he went overseas so I am hoping that is so he can approve me for remicade!   12 weeks really did fly huh!   How are you Ivy?? How are your setons going? How is everything in the world of you? It feels like spring already and I am so happy about that!
Posted 8/10/2009 1:46 AM (GMT 0)
I know! The blackbirds started singing their mating song a few weeks ago, and I started telling people that spring's coming, and they all said rolleyes "don't be stupid; it's too early", but lo! the birds were right, and spring's here. My nectarine tree is about to flower too, and I'm looking forward to some milder weather (NOT to summer though; they're saying this coming summer could be worse than our last one, ouch).

about your appointment, don't be surprised if they expect you to have a few more tests before sending off your Infliximab application. And please be prepared for a bit of a wait, even if you do qualify immediately. When I had my glitch with Humira (which I'm still angry about), I requalified within ten days, they then took *three weeks* to do the paperwork...

It's nice to think you've been able to trim that tube. You must be desperate to get rid of it.
Posted 8/10/2009 2:08 AM (GMT 0)
I am quite desperate to get rid of it, but not as desperate as I was at the start, when it was long and much more cumbersome. I remember thinking it would only be in for 3 weeks – but deep down, knowing it would be in for much longer. More than anything I am just so grateful that it is doing its job. Its funny how quickly you get used to things being stuck in there!   Cutting it did a world of good, the fact that it was long and pulling this way and that, it felt like it was hitting nerves down there. Now its nice and short and a lot easier to deal with, still difficult to sit and I have to sit ‘sideways’ but walking is so much easier.   You’re right, I should get myself prepared for a wait, but I think I will be OK, those 12 weeks went by pretty fast and I’ve got the MRI and CT out of the way (bowel and pelvis) so hopefully, hopefully I’m not too far away…..   I’m so glad the weather is heating up – but I must admit it never really feels like summer in Brisbane ! The mornings are a bit chilly and that’s about it really! I want to buy a new bikini for the swim season but I realised yesterday it will probably have to be a black one! L Still, black can be sexay in its own way. J
Posted 8/10/2009 6:44 AM (GMT 0)
Just wanted to add in that I'm glad to hear you're feeling a little better. Bleeding that much is scary! I'm also getting my seton out this week - been 3 months for me. I can't wait! I'm actually hoping I can talk the GI into getting rid of it while he's in there for the colonoscopy.  If not, I have an appt with the surgeon this coming Friday.  Whew.
Posted 8/20/2009 5:55 PM (GMT 0)

Phoebe..Hi..I'm from England, and just this afternoon ( 20th August 2009) I went to see my doctor because I had noticed blood in my stools and toilet bowl, for, oh, around I would say, 6 to 8 weeks.. not all the time, just on a few days..

Theres no pain and I havent lost any weight.. He examined me ( finger up my bottom) - it hurt ! then said there was 'nothing apparent' but he would arrange a colonoscopy at the hospital in about 2 weeks time ( I read on the note 'Urgent Referral')

Well..I came home and looked on the net and I found this site straight away with your notes, ( right from the beginning of 2005 ) and read all your notes and the kind replies, and well..

I just wondered HOW things went, as it seemed to stop after two pages.

How are you ?  What was it ?

The last I heard, you were still waiting for a colonoscopy quite a while later ?

Hope things worked out for you..its just that I wondered. ?

kind regards to you and everyone in this situation..its abit worrying isnt it..

sal

ps by the way I'm female and almost 62 - otherwise fit and active

Posted 8/20/2009 10:29 PM (GMT 0)

Hi Salappleby

 

I started posting in 2005 w2hen I was first diagnosed with Crohn’s disease – I’ve been having ups and downs ever since but have been living with the diagnosis since 2005 and have been admitted to hospital a few times since, and have had two surgeries for a peri-anal abscess and fistula in the last few months.

 

I mentioned this most recent bleeding to my gastroenterologist and he didn’t seem to see it as too significant given the extent of my crohn’s and the fact that it is in my colon and an aggressive form. I am thinking it must have been a fissure or a large hemmy in a vein because the bleeding was so intense and went on for so long, and I would also have stabbing pains in the area at random times through the day.

 

I certainly hope you don’t get the diagnosis of Crohn’s because it is a very difficult one, and four years later I am still trying to come to terms with it. But the people on this board are amazing and I don’t know what I would do without them.

 

Let us know how your scope goes , wishing you all the best!  :-)   

P

Posted 8/21/2009 8:08 AM (GMT 0)
Thankyou Phoebe for your very quick reply..You have certainly been through ( and still are) alot,, for someone so young and I wish you all the very best in your coping with this disease.. I know two sisters who have Crohn's Disease, and I think when we get something that we cant have any control over ( ie, its there and you cant do anything about it only accept it) - then we seem to, at first, dwell on it and wonder HOW we will cope, but then it seems to take a 'place' in the whole being of things, and its lived with, and worked around..if you get my drift.

I think so, anyway..I think it somehow gives us a different slant on life, and makes us appreciate the good times better..It just becomes part of the whole, if you like.. ( philosophical old me ! )

Anyway, I will certainly let the board know how I go on.. I am trying to be philosophical..Why worry ? Where does that get you?

as you Aussies say.." No Worries ! "

lots of love and light to you
xxx
sal..
Posted 8/23/2009 11:25 PM (GMT 0)
Ha! Yes, I definitely agree with your whole outlook on it all – I mean we are forced to take on this extra element to our lives, but I do think it makes us stronger, and weaker, in such very different ways.   I just went and searched for all the posts I had written since I started out on these forums, and I found a thread I’d written in the IBD forum, about bleeding, diahorrea etc, and how weak I was, and my ER visits and everything that was happening in my first year of uni, and I was so young and so naïve and had no idea at all what I was in store for, and it was sad. I sounded so chirpy, talking about my colonoscopy and how much I was looking forward to getting results and finding out why I was suddenly so sick, and even after the colonoscopy I was saying “I have deep ulceration and scarring, what does that mean?” and reading it all made me want to cry for the ‘old me’ who was chirpy and happy and care-free. But there is no point because this is life now and you just have to take it on and move forward.   I think I was in denial for a very long time and didn’t want to admit I had a life-long, serious illness. It took me a long time to come to grips with it, and its amazing that I’ve had it for 4 years now and I’m still only just coming to grips with it.   Hopefully I can make something positive out of my crohn’s life!  
Posted 8/24/2009 10:26 AM (GMT 0)

you certainly CAN phoebe, with an attitude like yours !  just keep positive and enjoy the good parts of life..let the bad parts 'ride' over you , and you'll come out at the other side stronger, more positive, and ready for the next good thing life has to offer  !

will keep you posted.. I go for colonoscopy on the 8th September..things are not as bad as you seemed to have, though..I dont have the same symptoms, not losing much blood at all and most days nothing I can see, also no pain or other complications, but, I do realise that if you do see blood, there may or may not be other symptoms/reasons.

I have had sigmoidoscopy in the past - have had an anal fissure - have had much much pain, and an operation to 'cure' the anal fissure..it could be a weakness there, I suppose.. we will see.. Also had an operation, years ago, to have piles removed, and that was successful as I had been losing lots of blood and had pain then.. and my blood count went downhill and I was very weak.

Other than those things ( and a few others I wont go into and bore people ! ) I'm ' fighting fit ! !

Wishing you lots of positive thoughts and love

sal

xx

Posted 8/25/2009 12:06 AM (GMT 0)

Ahh thanks Sal, please let us know how you go…. I remember when I was first diagnosed I was posting in the irritable bowel syndrome forum - - IF ONLY!!!

 

I hope you don’t come out with a Crohn’s diagnosis but at least if you do you’ll have more of a handle on it….. I think I was too young and naïve to take on the diagnosis with any kind of maturity…. I mean I kept going at uni and pushed through it all which took a lot of strength and determination, but I refused to take care of myself properly. These days I try to ‘listen’ to my body more, and act accordingly, like recently my symptoms were so bad that I stopped eating breakfast and lunch at work, which sounds terrible, but the ‘bowel rest’ really helped I think.

 

I hope you get some answers soon, and if its bleeding fissures, that they offer you a solution. Have you used rectogesic fissure cream before? Or steroid enemas? They are very useful and relieving.

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