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AB crohnie
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 2/26/2009 9:16 AM (GMT -7)   
Bammer, thanks for asking! Yes, I was diagnosed in April and had surgery 6 months later. Not to call down a doctor, but what idiots I used to have!

The real bad pain and cramps started in August of 2006. I couldn't walk upright and the cramps felt like labour pains. Really bad labour! I was having 1 bm every 2 weeks. I was going to the doctor about the same frequency. My first doctor told me it was Barrett's Syndrome (kinda like heartburn) and stress and sent me home with antidepressants. I asked him to run tests to make sure it wasn't Crohn's. My friend has it and we would compare notes. Almost exactly the same symptoms!

After begging for a colonoscopy (crazy eh?) he finally scheduled one in December of 2007. The results came back negative for Crohn's. After that, my doctor gave up and told me it was in my head. I started going to another doctor. He ran an ultrasound thinking that it was my gall bladder. When that came back negative, he sent me for an xray. That's it. Nothing more and then said that I was making it all up because of my friend having Crohn's.

After the weekend from Hell in March 2008, I called a doctor that I grew up with. I told him about the pain that I was in. He met me at the hospital for a morphine shot to get me thru for a few days while he tried to figure this out. On Tuesday morning he called to set up a ct scan for Wednesday morning. Finally someone was taking me serious. about a 2 weeks after the scan I got the results. Crohn's!!! Big Surprise! I just wanted to go to the 2 other doctors and say I told you so!

In September I ended up in the emergency room. I was dizzy, throwing up, and in more pain than I could handle. The surgeon on call ran another ct scan. He couldn't believe how fast my disease had progressed! I had a complete obstruction and also had a hole in my bowel. I had lost about 15 pounds in a matter of 1 month and wasn't able to eat anything.

My surgery was a complete success! I feel great. The best I have felt in years. My new doctor looked in my file and now figures that I had a mild case of Crohn's for about 17 years! Not in my head, not lactose intolerance and not stress.

Sorry this is so long! I sometimes have the big D in my fingers!
Diagnosed on my birthday in April. Happy birthday to me!!
Currently on Imuran and Pantoloc and various vitamins
Surgery in October for resection, feel great now
Tried Pentasa and Prednisone


Jordan59
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 2/26/2009 2:50 PM (GMT -7)   
AB,

Thanks for sharing. I was diagnosed in the mid-late 80's and my GI (and I) believe I had a mild case since I was in jr high in the early 70's. I was diagnosed with a cat scan as well, in the ER. I saw a GI the next day and he was able to guess exactly how my life had been since junior high -- blaming food allergies, thinking it was stress, misdiagnosed, etc.

Glad your surgery was a success!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/26/2009 6:10 PM (GMT -7)   
Hi Glad you finally got some help and glad your surgery was a sucess.Sometimes it takes awhile but it sure is nice when the pain subsides.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 2/26/2009 6:23 PM (GMT -7)   
Thanks AB Crohnie,
Everything happened very quickly for me. Had minor problems that took me to a Well Women's Clinic. Ordered tests including sigmoidoscopy, referred to GI who did a colonoscopy the very next day. Had surgeon called in during colonoscopy and admitted to hospital for more tests. Had Crohn's diagnosis next day. Relief as opposed to cancer which was everyone's original thought. Basically have had no symptoms since but next 18 months long story, many tests, many medical professionals which have brought us to this point.

Hope you feel great for a long time. Do they plan on keeping you on Imuran?
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


AB crohnie
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 2/27/2009 9:00 AM (GMT -7)   
My GI told me that I would be on Imuran until it doesn't work anymore. The next step after that will be MTX injections. Not sure about that one because I still turn my head when they take blood. How can I give myself an injection weekly and not look?
After my surgery, they did a biopsy of my appendix. They found cancer in there! My doctor said that this kind of cancer is very rare and slow growing. I have an appointment with my surgeon this morning to discuss my options. Has anyone else had this happen? It's a little scary when they say the big C word!
Diagnosed on my birthday in April. Happy birthday to me!!
Currently on Imuran and Pantoloc and various vitamins
Surgery in October for resection, feel great now
Tried Pentasa and Prednisone


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 2/27/2009 4:01 PM (GMT -7)   

Very sorry to hear that, it must have come as a shock. Have you known for awhile then? I know nothing about it but maybe they take your appendix out and go from there?

My husband gives me my MTX injections in the arm but I was shown how to do it in the front of the thigh which I thought would be easier if I had to do it myself.

One reason they recommended surgery to me now is that they cannot rule out cancer within the stricture and thought it was too risky to take biopsies when they did the endorectal ultrasound. Plus it showed deep scar tissue.

Wishing you the best and keep us posted.


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


AB crohnie
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 2/27/2009 4:41 PM (GMT -7)   
Just got back from doctor. My appendix was removed during my surgery and that's when they found the cancer. The surgeon is not too worried about it. It apparently spreads really slow so all I have to do for follow up is a colonoscopy every year for 5 years!!
Have you ever done the injection yourself? And also, what is an endorectal ultrasound? Just what it sounds like? Are you scheduled for surgery?
Diagnosed on my birthday in April. Happy birthday to me!!
Currently on Imuran and Pantoloc and various vitamins
Surgery in October for resection, feel great now
Tried Pentasa and Prednisone


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/27/2009 5:07 PM (GMT -7)   
Hi I haven't even known anyone that had cancer in the appendix ,hope they got it all and let us know how things go .Not sure if others here have had cancer in the appendix. Are you just getting your bio results now? Keep in touch and let us know how things are going. I'am not sure but I don't like injections that much either so it wouldn't be good for me either if that point came... I am getting better after having so much blood work in my days..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 2/27/2009 7:33 PM (GMT -7)   

AB I wondered if they took out your appendix at the time. I'm thinking 5 years is a long time to wait but hope you continue to feel good.

An endorectal ultrasound is just that. Couldn't find too much about it on the interent beforehand but there are other types of internal ultrasounds as well. They use a radial scope and they can use a linear scope to take needle biopsies into the stricture but since it is larger in diameter and less flexible, they thought it was too risky. I have pictures which show thickening through all the layers at the stricture and what concerned them the most was that there was some asymmetry to the degree of thickening. (My husband does ultrasonics on metal for a living so understands how it works). I have also had 4 colonoscopies, 3 sigmoidoscopies plus other tests and have had 6 GI's and four surgeons take a look (at their request). So surgery is scheduled for May 11th but once the decision was made, I wish I didn't have so much time to think about it.

I have never had to give myself an injection but thought I could. I can go to the clinic too but it is a bit of a drive.  Usually can't even feel it and have had no side effects. I don't watch and didn't today when they did bloodwork.

 

 

 
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


AB crohnie
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 2/27/2009 10:10 PM (GMT -7)   
I thought I had too much time to wait after the decision to have surgery was made but it was only 3 weeks! But now, the way that I feel, I would do it again next week if I had to. It was great to actually eat a meal of more than mashed potatoes or cream of wheat.

After reading your post, I realized that I know next to nothing about Crohn's. But I don't do a lot of research on it until I come across a word or procedure I don't understand. So are they planning to do your surgery lapro?

Yes, cancer of the appendix is rare and my surgeon has only seen 6 cases in my area. My GI wants to do a colonoscopy every year from now on so he'll watch for it after my 5 years are up with my surgeon. They believe that they got it all during my surgery but there is a very small chance that it did spread and they of course don't know how long I had it for.
Diagnosed on my birthday in April. Happy birthday to me!!
Currently on Imuran and Pantoloc and various vitamins
Surgery in October for resection, feel great now
Tried Pentasa and Prednisone


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 2/27/2009 11:29 PM (GMT -7)   

Sounds good and they will keep an eye on it. Believe me I knew nothing about Crohn's before being diagnosed other than knowing a couple of people who had it. I kind of became fanatic about researching and found this forum since they first told me surgery or Remicade were my options. (Plus the Prednisone made me a little hyper and I didn't require much sleep.) I have a lot to learn but seems like the right info has come at the right time and not too overwhelmed and learn how to put what you read into perspective.

I feel very fortunate to feel as well as I do and one reason why these decisions are so hard to make. Every doctor has been surprised that I have no symptoms when they see what is inside. But it is only a very small part. They think they should be able to do it lapo.

 
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


D-3 of 5
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/28/2009 1:37 AM (GMT -7)   
I am newly and properly diagnosed with CD or UC following a colon rupture back in August at the hepatic flexure.  I apologize for the long story, but it was a medical mystery for some time.
 
The story starts back in 1997 when I went to my GP, general practicioner doctor, for severe cramping and bloody loose stool.
He took a look and diagnosed it as just hemorrhoids and prescribed some proctofoam which did not seem to help but eventually after a couple of months the symptoms suddenly subsided.  Looking back now, it was a cortisone shot due to my severe seasonal allergies that my allergist found was the only thing other than massive benadryl to keep my mid May pollen allergies under some level of control.
 
So I go all these years thinking that these repeated flare ups of severe cramping, diarhea then constipation, difficulty and pain with bowel movement, and a repeated feeling of poor health as being just hemorrhoids.  It also needs noted that since 1997 I have had apthous ulcers in my mouth almost constantly, 5 to 12 times a year, and in large groups.
 
Around 2003 the allergist suggests allergy shots to try and get my allergies under control.  Despite the fact that I informed him that I had allergy shots as a child but had to discontinue them due to repeated reactions over time we tried allergy shots again.  After the third month of the shots and then after each allergy shot I would have a flare up of abdominal symptoms along with severe muscle and joint pain that would last 3 to 4 days and sometimes was accompanied with a low grade fever.  After 6 months of this I put an end to the shots as each shot increased the symptoms.
 
Two years ago the cramping, diarhea, severe muscle and joint pain was increasing in frequency and I finally went to an internal medicine doctor and insisted something was seriously wrong because at 39 I should not feel like I am 80.  A full blood panel was run and inflammation factors were off the chart, a high CPK, and a testosterone level lower than he has seen on most 80+ year olds.  The CPK indicated muscle involvement, inflammation factors were from unknown cause but he suspected the muscles and cramping may be related to it.  I was put on testosterone replacement, flexeril, and ultram, which seemed to help significantly for a while except for the repeated abdominal symptoms.  A second blood work showed some malnutrition issues with several key vitamins being low, so my vitamins I had already been taking was tripled and 1000 of B12 added. 
 
about one year ago numbness started to occur with great frequency in my hands and feet with no known cause.  We temporarily went off all medications except the testosterone and it had no effect.  A nerve conduction study was performed and it did not show anything serious but some of the results were just off the edge of normal.
 
Here we go to last August when I rushed to the ER due to what seems like a heart attack, heart rate over 100, BP of 180/160, and swelling in my right leg.  After one day of lots of tests including ruling out blood clots in the lungs and leg, the very bottom of the lung CT scan showed a black spot which indicated air in the abdomen.  Lo and behold a full abdominal scan showed the extent of the air which was causing pressur on the bottom of my diaphram and the abdominal aorta.  The surgeon treated it conservatively with nothing orally and IV antibiotics.  It does need noted that by the second day of my stay the blood work for the possible cardiac involvement did show a steadily increasing white blood cell count.  Had I waited until I had a fever and was ill, the surgeon informed me that surgery would have been required and very risky due to the onset of infection and the results would not have been good.  So I consider myself lucky.  The CT scan showed some possible UC or CD lesions.
 
November rolls around for a follow up endoscopy during a period of little to no symptoms.  The endoscopy shows no immediate UC or CD but the pathology report shows very large microscopic colitis in every colon biopsy.  The report indicates that the colitis must have been present for more than 10 years to be at that level.
 
Now I am finally seeing the light at the end of the tunnel but the gastroenterologist is only putting me on Lialda until he gets the IBDS7 results back and then will also do another full blood panel.  So far the Lialda has managed to stop the bleeding from this most recent severe flare up and only partially helped with the other abdominal symptoms. 
 
One final note.  He flat out told me to find a lower stress job sooner rather than later or we would never get a good level of control over the disease.  My current job is very high stress on a daily basis, not as bad as live fire combat training during basic training for the Army when I was younger, but still very close because it is continous. 

Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 2/28/2009 6:00 AM (GMT -7)   
AB your story sounds so similar to mine they told me the same thing its in your head. Even though i lost almost 100 pounds from 267 to 167. I also had a hole in my bowl as well go figure. Every time i see that doctor i'm not nice to him LOL.. You have to be almost dead before they do something.
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


AB crohnie
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 2/28/2009 9:23 AM (GMT -7)   
When I was seeing my surgeon yesterday, I made sure to tell him that I was grateful that he took me seriously. I told my new gp the same thing. He was the one who sent me to see the surgeon in the first place. But they all thought that it was my appendix. They couldn't believe that my Crohn's had gotten as bad as it had so fast.
Yes, stress is a trigger with me. The more I stressed about anything, the worse I felt. The worse I felt, the more stressed I became. It is a vicious cycle.
Diagnosed on my birthday in April. Happy birthday to me!!
Currently on Imuran and Pantoloc and various vitamins
Surgery in October for resection, feel great now
Tried Pentasa and Prednisone


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/28/2009 6:07 PM (GMT -7)   
Hi I know sometimes with my medical care I have felt some hopelessness in that the more I went to the Dr. the worse I felt so I know what you mean by feeling glad to be taken seriously. It can be hard at times but things have a way of improving after getting the proper care. My body seems to be better to handle stress since my surgery and I have had quite a bit of stress at times.... I think sometimes we are just not healthy , and it wears the body out.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


mull
Regular Member


Date Joined Feb 2009
Total Posts : 86
   Posted 3/12/2009 6:13 AM (GMT -7)   
i have been dygnosed with crohns 1993 went threw a rough few years had alot of surgery
done too had a colostomy done 10 years ago for one yr and had it reversed it was the
happiest day of my life had about 7 ops done but thank god now i am doing well
but it is nasty crohns is i am living in limerick but it is great to keep in contact with
people and at least we can relate to one another
meds taking are pentassa500mg 6 a day b12viataim injection once a month
and started on a new tablet puri-nethol50mg it is something the same as imuriam
just did not agree so thats me lov to hear from anyone
im a 40 yr old woman who has CD since 1993..
current medication is pentassa and purinethol.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/12/2009 8:34 AM (GMT -7)   
Welcome AB,
I am so sorry you have had such a struggle and now with the cancer issue...wow that is really rough.
I am glad you found us keep us up to date with how things are going.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

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