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06-22-2017, 09:42 AM   #1
Cachoue
 
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My story so far

Hi
I've been reading pages and pages of threads for days, and I just now decided to join and post something. I'm currently undiagnosed, but in the process of (hopefully) finding out what's wrong with me. I'll try to tell my story (so far) the best I can.

I've apparently had digestive troubles ever since I was born. My mother used to tell me that as a baby, I couldn't poop naturally, the way most newborn do. They had to press on my belly to create some kind of a bowel movement. I don't know for how long they had to do that, and I have not being diagnosed with anything at that time.

Then, ever since I can remember and until recently, I've always had MAJOR constipation, occasioning regular pains, and very irregular bowel movements. I sometimes would pass days, up to two weeks without having one. Many times, after weeks of not going, I would have these terrible cramps that felt like I was going to die on the spot, and after a very hard bw, finally feel a bit better, but completely exhausted.

About 5 years ago, I started to develop an eating disorder, and I'm mentioning it because i think it definately did not help the cause. I definately did some damage somewhere in my body by starving myself, abusing laxatives, then proceeding to eat everything in sight, etc. I don't like talking about this as they're not my most glamourous moments...But I feel like I should mention it. At some point during those times, I started feeling often very bloated, and not able to pass gas without ''pushing'' on my stomach in a certain way, and rarely able to pass stools without the use of laxatives. The issue with gas kept getting worse and became an almost everyday problem. In case you care to know about this, I'm doing okay now, regarding the Eating Disorder issues, at least.

About 3 months ago, I had belly pains, followed by a BW with hard stools and felt something hurts down there. I noticed afterwards a little bit of blood on the tissue. I thought maybe something tore, or maybe it was an hemmoroid, and it probably would go away by itself. I did have a few drops of bloods for a few BW after that, with some pain while passing stools, which reinforced my idea of a tear or H. Then it stopped hurting and bleeding and I was fine for a few days.

Then the real trouble started. The bloating intensified, to a point where I almost can't wear pants anymore because my waist size increase so significantly that I must look about 6 months pregnant. I started having D, with lots of mucus and blood, (bright red, but with a lot of clots) and urgency to go. I would go anywhere between 5-15 times a day which is just about the extreme contrary of what I'm used to. There is no pain that can explain the bleeding like the first time. It doesn't feel like a tear or an hemmoroid. Each time there was mucus and blood. I've also had 2-3 times a horrible ''crisis'' with the worst belly pain, nausea and feeling like I was going to faint or die on the toilet.

I finally went to the clinic (because I don't have a family doctor), and got papers for bloodwork, and urine and stools samples. She gave me the -Hum!- Fingertest? And found no hemmoroid or fissure that could explain the bleeding. The doctor said it looked a lot like CD or UC, which is what I was suspecting beforehand.

Since going to the clinic and explaining my symptoms, I had increasing back pain, on one particular day it was unbearable low back pain. I've also started feeling hungry in a very weird way, as in my stomach cramps up as if I hadn't been eating in days, therefore I eat something, and I end up feeling the same hunger pangs after 10-30 min. I'm still awaiting a colonoscopy, which is supposed to happen anywhere within 2 months...But it's long, and I don't know how I'm gonna continue, as things seems to constantly worsen.

I still have D/loose stools/ribbon stools with lots of blood, mucus, everyday, and I'm increasingly fatigued. I find it very difficult to go trough the motions of everyday stuffs, it seems lifting my arms and legs is demanding a great amount of energy that I don't have.

I am very sorry for the lenght of this. I didn't exactly know where I was going when I started writing this, as I don't even have a diagnosis, just suppositions. But I relate to a lot of things I have read here, so I thought maybe it would be okay to write down everything somewhere where people can understand.

Thank you for actually reading this whole novel of mine.
06-22-2017, 10:14 AM   #2
ronroush7
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Hi. Don't worry about the long length. I am sorry for what you are going through. There are others on here who are undiagnosed. There is even a support group for those who are undiagnosed. I hope they can get your cokonoscopy done soon,get some answers and get you on the right medicine.
06-22-2017, 10:20 AM   #3
Cachoue
 
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Thank you for reading and replying.
I hope so too, when I say it's long, it's just that I find it harder and harder to go to work everyday and continuing with daily routine with the pain and symptoms increasing.
06-22-2017, 10:25 AM   #4
ronroush7
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I wish you relief soon. Keep us updated.
06-22-2017, 10:35 AM   #5
Cachoue
 
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Thank you! I will.
06-22-2017, 11:24 AM   #6
Jabee
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It sounds like you are having a terrible time. The thing I would worry about would be a partial or complete blockage in your intestines. Please don't hesitate to go to the Emergency Room if the pain stays bad or even if you feel faint; it sounds like you are losing a fair bit of blood as well. Please let us know how you are.
06-22-2017, 12:49 PM   #7
Cachoue
 
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Thank you. I've been thinking about going to the ER mainly because I don't see how I can go on for 2 months this way, if that's the time it takes to even get to the colonoscopy. But in general the pain is not to a point where I can't move, it's painful and very uncomfortable, but so far I've been forcing myself to go to work everyday, so I'm thinking the actual pain doesn't ''deserve'' a visit to the ER?
06-23-2017, 12:34 AM   #8
Lady Organic
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Bonjour Cachoue

I think you should go to the ER. A 2 month wait is too long for the pain and increasing symptoms you are having. Your symptoms are indeed pretty suggestive of an IBD or something serious. There are usually spots for GI emergencies in hospitals. I'd go during the day so you can get a chance to see the first GI on service in the next morning. Week days are preferable rather than weekend, but go before if your instinct tells you to go. Make sure the hospital you go has endoscopy service.
Courage
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
06-23-2017, 06:27 AM   #9
ronroush7
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I agree

06-23-2017, 04:40 PM   #10
Cachoue
 
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Bonjour Lady, thank you for your advice. I might decide to go this weekend, what makes me doubt is that its not an "unbearable pain" at the moment so i tend to question if it's serious enough. I'm also a scaredy cat whrn it comes down to doctors and needles and such things.

As of today, im still bloated with gas and i cant seem to have a bw. When i think its happening, all that comes out is air and blood.

06-24-2017, 01:23 PM   #11
Jabee
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I hope very much you have gone to the ER! Passing as much blood as you are is definitely not a good idea (and your other symptoms sound just as serious as well). I hope you get some answers soon.
06-24-2017, 02:59 PM   #12
Cachoue
 
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Thanks for caring so much! I did not go just yet...had an ok day so far, started feeling nauseous about an hour ago and only now feeling like i "gotta go" but im stuck in a car and i probably wouldnt be able to anyways. Im thinking of going to the er tomorrow maybe.

06-24-2017, 03:06 PM   #13
ronroush7
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Take care of yourself. Go as soon as you can.

06-24-2017, 04:59 PM   #14
Cachoue
 
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Thank you for your support!!

06-25-2017, 10:04 PM   #15
Cachoue
 
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Update: So i'm back from the ER. I don't really know what to think. Apparently there's absolutely nothing wrong in my bloodtests/urine and stool samples of last week, and they took some more blood today and still everything seems fine. They sent me back home and apparently put a rush on the colonoscopy request...we'll see, I guess.

06-26-2017, 11:49 AM   #16
OleJ
 
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hi Cachoue
Thank you for sharing your situation. I am curious: what was the name of blood and stool tests did they did and that came back negative?
06-26-2017, 12:29 PM   #17
Cachoue
 
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I wish I knew...I believe I still have a copy of the request for the bloodwork at home, I'll check tonight. As for the stools, I am not sure, there was no particular name told to me, but there was one that needed 30 ml of stools, i think, while the other was two thin tubes of pink liquids that necessitated very little stools added to it, done at about 24h apart from each other.
06-26-2017, 12:50 PM   #18
OleJ
 
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I see.. I know that the last thing you think about sitting in pain in the ER is to get this kind of information, but unless you have online access to your medical file, it is a good idea to keep track of these things, like a dairy of the most important markers (I keep an eye on leukocytes,CRP, calcprotectin, haemoglobin, Vitamin D levels, and B12 levels)

It sounds like the first stool sample /could/ maybe be a calcprotectin test? Could probably also be something else I guess. The second two does not sound like it. I will suggest you ask about it next time you see your doctor, as it is often used to indicate active infmallatory bowel disease (IBD).
06-26-2017, 01:23 PM   #19
Cachoue
 
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The thing is here...They don't ''give'' you your results? I mean, they receive it, interpret it and give you the ''I don't see any marker that is suspicious'' but that's it. They don't give names and specifics, really :/

I'm guessing it must have been checked in there somewhere (the calcprotectin test), since the first doctor I saw was suspecting UC or CD, so it would only be logical that the test she ordered were meant to check that out...

I don't have a family doctor. I went to the clinic once, and yesterday to the ER. It's hard to keep track of anything this way. (I'm in Canada, by the way).
06-26-2017, 04:39 PM   #20
OleJ
 
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Understood Cachoue. It sounds very likely that your doctor did the calcprotectin test then. I hope you will feel better soon.
06-26-2017, 07:04 PM   #21
Cachoue
 
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Thank you. Any idea if one can have ibd yet have stools samples/calcprotectin negative? Is that ever heard of ?

06-26-2017, 08:56 PM   #22
cmack
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Hi Cachoue,

Make sure to keep pushing the doctors for answers. You sound like you are going through hell to me. If one doctor dismisses it go to a different one if possible, ER anything. Hopefully someone catches on that you are having serious issues. Please make sure not to pass these symptoms off, I would hate for something bad to happen to you.

I wish you the best,

cmack
06-26-2017, 09:06 PM   #23
ronroush7
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I agree.
06-26-2017, 09:09 PM   #24
Cachoue
 
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I'll try... Here most tests dont cost anything, however you cant exactly request them as you wish. Ill do my best to push because i cant go on like this forever as it is right now. I verified on my papers at home and a fecal calcprotectin was requested so i guess it was negative too. Dont know what to think.
06-26-2017, 09:21 PM   #25
cmack
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I would be concerned about the bleeding and possible obstruction before anything else. Then try to get the doctors to find the cause. I got sick for the first time when I was 27 and I thought I had a minor issue that could be solved with preparation-H. I ended up in emergency surgery. 14 surgeries in all. Now I'm a lot better at age 39 but I wish I had done something sooner, anything. I would have been better off nagging at the the doctors from the beginning.
06-26-2017, 09:44 PM   #26
Cachoue
 
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Thank you so much for all the caring. Sounds like you went trough Hell with a capital H yourself. Somehow today was worst in matter of bloating and pain but i saw very little blood aand had formed stools for the first time in a while. I can't do much right now except wait for the colonoscopy. I'm a little worried as this hospital seems known to screw things over...someone i know went for a colonoscopy there and had the worst pain of their lives because they were never given anything beforehand. Im not gonns let thag happen though....im way too scared to go trough aany procedure like this.

06-26-2017, 10:03 PM   #27
cmack
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Hey Cachoue,

I really do wish you all the very best, I hate to see people struggle. My best advice is to educate yourself on how these procedures are done and with what types of sedative/painkiller/anesthetics, then be sure to discuss the procedures and ask lots of questions. Unfortunately we have to advocate strongly for ourselves and some doctors are just not up to speed with IBD/Crohn's or other intestinal issues. I had to make notes before my appointments so I was sure I had addressed my concerns, you might consider the same thing.

I'm around mostly every day if you want to chat.


Finest regards,

cmack
07-03-2017, 09:59 PM   #28
Lady Organic
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Im glad you did calpro. calprotectine result takes about 2 weeks sometimes 3 weeks to get the resullt here in Montreal. here is the number to call to know if the results are ready: 514-252-3400 , poste 3549. These are the medical archives of hopital Maisonneuve Rosemont where all calpros are done in MTL. The secretary can tell you that the result is ready or not, but she cant tell you the result over the phone. When its ready, you have the right to go pick it up on your own at HMR (maybe at your hospital too, call the archive dep of your hospital to know). If you happen to have high result this will help push maybe even faster for the colonoscopy. Since you dont have a family doctor who can advocate for you, you might have to do it yourself at the ER. In case of a positive result on hand, this could maybe help you being seen by at least a resident GI at the ER next time. Keep in mind its usually more difficult to be seen by a specialist over the weekends. Good luck.
07-10-2017, 09:20 AM   #29
Cachoue
 
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Thanks Lady,
When I went to the ER, they said they could see my results in their system and said all tests were negative and looked fine. No more details, but I'm guessing the calcprotectin must have been in there too? Which would mean they were negative as well...

Anyways...Still waiting for Coloscopy. I had a break of bleeding for 4 or 5 days, then it started again, passing blood, blood clots and mucus while passing gas and ugh....I just want them to call me...
07-10-2017, 09:31 AM   #30
ronroush7
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Sending support.

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