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NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 1/26/2010 2:33 PM (GMT -7)   
I feel strangely kind of nervous about making an intro thread. Well, here goes nothing... skull

I'm a 35 yo female. I got diagnosed with Crohn's about 11 years ago. (I think I was diagnosed in 1999, but my memory is so bad... confused) I do remember how it started, though. A few days after Christmas, I got diarrhoea. Mild diarrhoea, no more than 1-2 BMs a day, but it wouldn't clear up. So a few weeks later my mum persuaded me to go to the doctor's, which I did. I got a locum doctor who was very good and did not tell me it was "only" IBS or anxiety, as many with considerably worse presenting symptoms than mine have been told. Thus it was that I got all the tests done (stool sample, colonoscopy, SBFT) and a diagnosis of Crohn's a few months later.

I was truly surprised and, in all honesty, did not really believe it. I thought that the diarrhoea would go away at some point, along with the disease. My scepticism was based on two fronts: the mildness of my symptoms and the fact that my brother had been diagnosed with Crohn's only a year or two earlier than me. I never considered the possibility of a genetic link, so at that time it seemed like an absurdity that I would get the same "serious" disease as him. Also, my brother had bloody diarrhoea with his disease, which I didn't with mine. The very words "bloody diarrhoea" made my puny non-bloodied diarrhoea pale into insignificance.

And for the next 5-6 years my Crohn's did traverse a very mild course. The diarrhoea increased a bit in frequency; occasional cramping - that was it. I did try various mesalazine drugs during this time (Pentasa, Asacol, sulfasalazine, etc.), but all violently disagreed with me - after just one dose I'd get symptoms resembling an acute flare-up. Since I'd never had an acute flare up before, this was quite nerve-wracking and frightened me off the 5-ASA drugs permanently.

Sometime in 2005, things took a turn for the worse. But not in a typical Crohn's way, although my Crohn's symptoms also got worse. I developed fevers. Bone-chilling ones. They were only moderate grade (between 38.5 and 39C typically), but they were enough to make me feel like I was at death's door. And the fatigue that accompanied them was extreme: some days just making my way down the stairs was a major effort. These fevers were at their height in '06, continued on and off throughout '07 and finally went away for good after a severe flare up in Jan/Feb of '08.

So that was fun. Along with the fevers, I developed anaemia. Couldn't tolerate oral iron. An attempted iron transfusion made me go into anaphylactic shock. No more iron. Also, the results of my blood tests were whacky enough for me to get a referral to a haematologist. The haematologist didn't find any underlying blood disorder, though.

In 2007, I had a colonoscopy and SBFT. I don't know what the SBFT showed, but for a rare change I did actually get the results from the colonoscopy. The report said that I had "severe, extensive" Crohn's disease of the entire colon and terminal ileum, which included ulcers everywhere. I believed I had CD then! =/ But when I saw the IBD nurse a couple of weeks later, she basically said it was worse than it looked. I should have been happier than I was at that news, but truth to tell after two years of feeling really ill I felt a bit fobbed off by it. (Although to be fair I wasn't continuously ill; I did have breaks from it.)

Medication I tried during this time was prednisolone and azathioprine. Each time I took a course of pred (3x in total since I've had CD, I think), it got rid of my symptoms for a week, then they came back. The azathioprine did nothing for 3 months, then I ended up in a flare.

2008 was easier. Diarrhoea 4-5 times a day, some abdominal discomfort after meals (esp. in the evenings after dinner), but no fevers. I was happy, healthwise.

In 2009, things got bad again, which is why I'm here redface I didn't become seriously ill, but the basic Crohn's just got worse. Diarrhoea up to 10 times a day, some serious discomfort/borderline pain after eating. In early summer, I started 6-MP. I had no hopes for this whatsoever, but I mentally gave myself a target time of six months for it. To my utter surprise it began showing signs of working after two months. After 3 months I felt as close to remission as I had ever been: 1 daily BM (still diarrhoea-y, but whatever <_<) and no discomfort at all after eating. I was surprised but delighted!

The remission lasted for just long enough for me to believe it was permanent. about a fortnight in other words. Then the usual symptoms started to slowly creep back. In December I developed what I thought was a temporary obstruction (posted about it in another thread...) and excruciating waves of pain. Since then, I've developed regular abdominal pains (as opposed to mere discomfort) and bloating and gurgling as fun new symptoms. I'm going to the toilet somewhat less, but what comes out is still usually pure diarrhoea. On the rare occasion I've passed anything solid, it has been narrow - about the width of a finger. I think I have developed a stricture, although I am not sure. Got a hospital appointment in early March.

Phew. I feel braindead after this post. I hope I haven't bored you all silly with it. Before I go ahead and post, I would just like to say hello and thanks for this forum. In the last few months, I've done more reading up on Crohn's -- mostly here, but on other medical sites as well -- than I have done in all 11 years beforehand. Hello smurf

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/26/2010 3:21 PM (GMT -7)   
Hello and Welcome. I think you will find that there are some very helpful and friendly people here. We pretty much ask and answer just about anything, no topic is off limits.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 1/27/2010 12:42 PM (GMT -7)   
Thank you very much, Zanne. But I see my verbose ways have frightened off the vast majority again. At least, I hope it's my verbosity and not something even worse.

</paranoia>

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/27/2010 1:09 PM (GMT -7)   
Welcome to Healingwell, just sorry you have to be here. It does sound as if you might have developed a stricture. You should ask you doctor about a small bowel follow thru thats one of the best test to show any strictures. Good luck and keep us posted.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/27/2010 6:29 PM (GMT -7)   
Welcome to the forum, sorry you have to be here. I hope you feel better soon.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 1/27/2010 7:09 PM (GMT -7)   
Thanks, the both of you. Appreciated!

I'm sorry I have to be here too, but I feel like I can't complain too much when many have it worse than I do :-/

I think I will try to get a SBFT done, as this isn't 'normal' Crohn's for me. Used to have dinner, then diarrhoea a few times later on and once or twice next morning, then that was it - system was emptied and it felt good until my intestines filled with food again. That was better than what I'm going through now, though. Every day (especially in the evenings) I feel as bloated as though I had eaten a huge restaurant meal, with seriously sore guts, a feeling of pressure, and a constant ache running into pain, with sometimes sharper stabbing pains. I just hope the GI I see takes me seriously; if I'm feeling cynical then sometimes I think the only thing they care about is how many times a day you go to the toilet. >_<

Anyway, I'll stop before I write a post as long as my first one ;p

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/27/2010 7:56 PM (GMT -7)   
Welcome, I'm impressed by the length of your post, jealous really as it would take me at least an hour to type that long a post. You certainly seem to follow the "normal" progression of this disease. Looking forward to more posts from you!
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Asacol, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/27/2010 9:08 PM (GMT -7)   
Hi, I always enjoy a nice cup of tea (I prefer chamomile over the rest), so I'm glad you joined, but at the same time sorry you have to be here.

As you know with your brother having crohn's, that there are really no 2 CDers alike, often those with CD that experiance bleeding are the ones that have CD activity in their colon/rectoms, typically when CD is affecting the TI or any other upper part of the GI tract, bleeding isn't a common symptom...of course nothing is written in stone either when it comes to this DD.

BTW, my mom has ulcerative colitis and I have crohn's, she didn't get sick with her UC until after I got sick with my CD...there's no rhyme or reason when it comes to IBD that's for sure, but there is definitely a genetic link to it, unfortunately the link is still poorly understood.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


MAL76
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/27/2010 9:36 PM (GMT -7)   
Welcome and glad you are here as this is a good place to be amoung folks who can relate in one way or another to your situation.
I too am on 6-MP and found it to be a good stabilizer, however by design it takes at least 3-6 weeks to be at a baseline in your blood stream, I assume that your docs are monitoring your blood levels monthly for any problems. It sounds like you have a stricture and need to have it fully investigated by professionals. That said, I ended up that way in 2006 and had to have a second resection. Afterwards have been in remission and on 6-MP continually. This drug will not fix physical problems of the intestine such as a stricture, it does help with the inflammation which leads to scarring and tissue build up which can cause a tightened area, making it painful and hard for things to pass.
I have experienced most of the other symptoms you have, low grade and sub-fever, anemia, diarreah for most of the 34 years ( I get concerned when I have a solid BM as it is not my norm), was on long term prednisone and so developed osteoporosis. I found that educating myself, learning biofeedback so I could understand what my body was telling me, asking a lot of questions of my doctors (they would say I am a very proactive and demanding patient) has brought much understanding about how this disease effects me and my life. Since this effects everyone differently and no one solution fits all, at least you can have some peace knowing that knowledge is power and you can (with the help of your physician) try different things and see how you fare. Sounds like the main thing for you now is to get stabilized and some good remission under your belt. Meanwhile research and ask a lot of questions. Good luck at your app't in March and hope they can get to the bottom of it so you can have some stability.
Cheers!
50yo Male Computer Tech w/ Crohn's diagnosed in August 1976, big part of my life for 34 years.
Whole gammut of meds...Sulfa drugs to start, lots of prednisone for a long time (Osteoporosis), Asacol, Entecort, Flagyl..name a few.
Now maintenance is 6-MP, multi-vitamins, folic acid, calcium citrate, CoQ10, B-12IM, fish oil, holy basil, good diet & exercise.
2 surgeries, 1996 & 2006, 22 inches removed but luckily no bag.
Feel blessed that I have had a less severe version as compared to others who are less functional or have died.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 1/28/2010 5:21 PM (GMT -7)   
Urgh, have felt dreadful tonight. Now would be a really, really great time to lose my appetite for a few weeks, but I still enjoy the taste of food! :-/

@Grandpato2 - It did take me about an hour to type. It's not so much the actual typing - I can touch type, so I'm a pretty fast typist. It's more the deciding what to write, editing for brevity/clarity, reluctantly deciding to junk that great anecdote in order to prevent my long post from becoming even longer - that kind of thing. If it's any consolation, I write a lot more than I talk, and I wished I possessed the gift of the gab.

@pb4 - I went through a phase of drinking camomile, but these days it's English Breakfast with milk and no sugar :p

You got it right with my brother: his Crohn's is basically proctitis. It took years before I knew why he took rectal meds, and I didn't. He does get flare ups from time to time, but his meds by and large have worked for him. Also had a cousin with Crohn's and my mum's aunt was a suspected Crohn's case. So in my case there is a definite genetic link. Sorry about your mum. Hope her UC isn't too bad.

@MAL76 - Oops. I see I forgot to say I stopped taking the 6-MP. I was on it for about six months in total. The brief remission kicked in at around the 3-month mark, but after that my symptoms came back. Slowly at first, but then I had what I thought might have been an obstruction and after that things just got worse. By January this year I was fed up of taking a drug that no longer seemed to be doing anything at all; plus I was a bit worried it might have even brought on the new symptoms somehow. I did go to my GP about it and he didn't advise me to stay on the 6-MP, so I cancelled the prescription. I should've told him I suspected I had a stricture, but I didn't...

It's because I'm a bit of a coward when it comes to doctors. I'm very bad about speaking to them. Just telling the GI at the hospital that I think I have a stricture will be something I've never done before: offering up a suggestion about my own disease. I don't know which worries me more: the GI saying patronisingly "No, I don't think so" or the GI taking me seriously and running some tests, which then show nothing. I actually worry about these things :-/

But I really shouldn't let that stop me anymore. If there's one thing I've found out over the last decade, you can't rely on doctors to notice everything that's wrong with you.

*yawns* Erm, well, anyway maybe that's a hint to stop... >_>. I do actually feel very welcome to HW! Thanks everyone. I knew this was a good forum when I first stumbled across it :p

MAL76
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/28/2010 9:33 PM (GMT -7)   
Just IMHO, we all know to some extent what makes us tick. In my case I read hunches about my body and have an open dialog with my doctors. I realize that not every one can do this. What has helped me over the years is open dialog with specialists, it gives them a window into me that they cannot get from a catscan, UGI, Colonoscopy etc. Those tools provide hard data. My gut feelings and perceptions give them better understanding. There have been many times I have been off base with my ideas, the doctors give me feedback about the medical reasons why it might be wrong, and so it goes, always a back and forth dialog. I realize that not all doctors like this or subscribe to this, I have simply moved on to ones that do and who are not offended by my active and proactive involvment in my treatment. Although I can say I have been lucky over the course of this, most are very receptive to my approach.

Bottom line, don't be afraid to talk to your doctors, they are people too, not gods. Treatment and wellness should be an open two way street. We must be our own best advocate paired with a professional to obtain results....mainly, wellness and the best quality of life as possible under the circumstances. Don't be afraid to probe for answers, in a nice way of course (which isn't always easy when you feel like crap!)
50yo Male Computer Tech w/ Crohn's diagnosed in August 1976, big part of my life for 34 years.
Whole gammut of meds...Sulfa drugs to start, lots of prednisone for a long time (Osteoporosis), Asacol, Entecort, Flagyl..name a few.
Now maintenance is 6-MP, multi-vitamins, folic acid, calcium citrate, CoQ10, B-12IM, fish oil, holy basil, good diet & exercise.
2 surgeries, 1996 & 2006, 22 inches removed but luckily no bag.
Feel blessed that I have had a less severe version as compared to others who are less functional or have died.

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