Crohn's Disease Forum » Your Story » Just Diagnosed


04-18-2011, 07:38 PM   #1
Bill41
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Just Diagnosed

Hi everyone, in 2005 I had bleeding and severe pain when having a bowel movement...got so bad I went to the hospital thinking it was a hemmoroid but the emerg Doc thought worse and thought it was cancer. Got in in a week and had a biopsy done, guess the Doc that did that wasn't sure what it was and after that I went downhill with sepsis rather fast...lost 40 pounds in 2 weeks. Admitted me and got a specialist who started me on heavy antibiotics and ran a MRI. Turned out to be a single fistula.
He took me to surgery after 10 days of antibiotic treatment where I had a draining seton put in.
Going in he wasn't sure if he would be able to save my colon, but the treatment did help it. There was a few cases like mine where they didn't know what was causing the fistula. The sepsis did a number to me and I was off work for 4 months.
Tests and more tests for Crohn's but nothing ever substantiated their theory that I had "mild Crohn's".
5 years later my seton fell out, and the minor bleeding I experienced throughout the years got worse as did the pain when having a bowel movement. Finally got to see the Doc and he did a digital (along with the resident Doc), sigmoidoscopy and fistula probe...without anesethec!
Found I had 3 fistulas and 2 fissures. aid it was Crohn's.
Turned me over to the GI doc and he suggested I go on Remicade...he then sent me for blood tests and another appointment in 2 months.
Did not give me anything for the interim, is that odd or what?
04-18-2011, 08:13 PM   #2
mikeyarmo
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Welcome to the forum Bill41!

I am so sorry to hear about your experiences over the past 6 years. It sounds like it was a pretty scary ride for you through all of this.
Your GI might be of the opinion that you need something stronger like Remicade and that nothing else will work in the short term. It is a bit odd I feel that they did not at least try something (Prednisone for example, which usually can work pretty fast. It does have it's side effects though...) as 2 months is a fair amount of time.

As long as you are able to function during the day pretty well, you might be fine to hold out until that time. If you have no idea how you can wait 2 months then it likely makes sense to get in touch with your GI soon and see if you can get him to get you on something in the mean time.

Good luck and I hope to see you around the forum!
04-18-2011, 08:14 PM   #3
Julian
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That is very odd - a very ignorant thing to do. I am sorry to hear of your troubles. You should get in to a GI sooner. Call their office, talk to a nurse and tell her what is happening and they should be able to get you on an overbook or after hours or something.
04-18-2011, 08:57 PM   #4
Crohn's 35
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HI Bill, wow a sigmoid with no nothing for pain?? That was rude enough, then nothing for meds til your 2 month app for Remicade? Makes me want to check out their credentials! If it was me, I would call and either ask for some meds or get the ball rolling for Remicade. Sometimes you have to be firm. NO one should be in pain. What country are you in? Someone should help you from your area or at least advice.
04-19-2011, 08:45 AM   #5
ameslouise
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Hi Bill and welcome!

Yes, I agree with all of the above! Two months is a long time to go with nothing until you start the Remi. Even then it can take a couple months to kick in.

If you are suffering with daily symptoms, I suggest you call the doc/nurse and explain that you need something to get you thru.

Good luck! - Amy
04-19-2011, 12:14 PM   #6
Jer's Girl
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Welcome Bill! I agree with what everyone else said. Hang in there buddy. You sure have been through a lot.
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04-19-2011, 12:43 PM   #7
social me
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Hi Bill, I was recently daignosed 2 months ago but had symptoms for over 2 years it wasnt until I TOLD the doc I want an x ray or GI as he was about to stick me on my 2 round of antibiotics thinking the chandge in stool was a virus. Sure enough the MRI showed colon inflamation so they thought it was colitis he ref. me to a GI who took many bloods samples all at diff. times ( again due to me saying did youcheck this etc) UGH! Who is the doc here why am I paying You? So after the upper endosocpy they saw I had severe in the colon moderate to severe in intestines and damage to the espohugus from acid reflux. Which they all knew about for yers and did nothing. I have been on remicade for another ID and they want to try one more round then in another 6 weeks do another colonoscopy to see if it is effective in treating Crohns. Until then he put me on asacol, iron and prilosec. I just had remicade 10 days ago. So far i am still vomiting but the d is gone. I also pushes for a b12 shot which GI said I didnt need so I went to my family doc he looked at my b12 , saw I was low and has put me on a shot 1 x a week for 6 weeks. It is frustrating because this is your life and you seek doc hoping they will help you but what I have learned is no one knows your body like you and if you think you need somthing to help until then, then by all means tell them if there is somthing to help. As much vomiting as I have done it toodk an emergency call last fri just for him to give me phengren to help which it has. My ques. Why didnt you give this to me weeks ago when I told you I was sick and vomiting at least every other day if not daily. So I understand your frustration and as you will se others are frustrated as well. Stay strong, educate yourself, believe in your self and Fight for want you need. Sadly sometimes that is what it takes. I wish you luck keep us up to date on how you are. Till then try to keep
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Been on Remicade for over 2 years for other immune disorder I have. Docs not sure this treatment will be effective for me as a treatment for Crohns.

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04-19-2011, 02:38 PM   #8
Astra
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Hiya Bill
and welcome

Just to concur with all of the above too!
Get on the phone asap and demand some help.
Let us know how you get on and good luck
lotsa luv
Joan xxx
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21/02/14 Right hemicolectomy surgery




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04-19-2011, 08:02 PM   #9
Bill41
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Wow...when you don't know it's sure good to find people with knowledge of the problem.
The Doc I first saw was the top gastrointestinal surgeon in Ottawa, the GI specialist is supposed to be a very good one too..guess that's the direct result of Canadian free healthcare now...
Actually felt good today at work...abdomen pain was gone, no washroom emergencies...until late afternoon...then it was revenge of the gut...tried to turn me inside out!
I'll contact and see if I can get anything...
04-19-2011, 09:39 PM   #10
Crohn's 35
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Ha Bill, I see you are a Canadian, don't surprise me you Gi wasnt all that informatiive or caring. I have had 5 Gi's and only the very first one and the one I have now are good, the others damn near killed me. I also saw a Gi in Mount Sinai, and all he said was surgery ...number 3, but I have avoided it so far. If you have a lot of diahread, get your doctor to prescribe Questran, makes life easier. If you use digestive enzymes they do help to break down carbs,protein and fats, some even lactose. Most of all get something for pain or meds to carry you over. Gi appts are very hard to get in Canada.
04-21-2011, 06:50 PM   #11
Bill41
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Yeah, I called and he never returned my call, missed work yesterday, had a bad night and most of the day....the D is very strange looking, almost like a pinkish mucous thats very sticky...is that from the fistulas? I had to have had a blockage because in the late afternoon yesterday I had a bowel movement that almost made me vomit when it was moving through the intestines...felt good after but soon after that the mucous again.
04-21-2011, 08:02 PM   #12
Jer's Girl
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That doesn't sound good Bill. If your Dr doesn't call back, and your pain increases or you get a fever, you might want to consider the ER. When I was vomiting from trying to go, I did have a block, but if you are having BM's I don't know. Better safe then sorry I'd say.
04-21-2011, 10:54 PM   #13
chas-chuck
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Hi bill. i agree with everyone. 2 months is entirely too long. Get on the phone ASAP and talk to your Dr. You deserve better treatment. Good luck in your journey.


chas-chuck
04-24-2011, 06:58 PM   #14
CDDad
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Hi Bill,
I'll just chime in and agree not to wait. You could start healing and feeling better sooner. It seems in medicine, the squeeky wheel does get the grease, and you really have to be your own advocate.

Good luck!
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3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
04-28-2011, 09:46 PM   #15
Bill41
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Yeah, got to see my personal doc, he prescribed me cipro and flagyl after much discussion...day 2 on them and I'm seeing a change.
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