Newbie needs input

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sharon82657
Regular Member


Date Joined Apr 2007
Total Posts : 23
   Posted 2/17/2008 9:00 PM (GMT -7)   
Ive been reading this forum for the past year so now it's time to ask for some opinions/advice.
 
 Went for my first  routine colonoscopy a year ago. Doctor found a stricture at the terminal ileum accompanied by chronic/acute (i thought you could only have one at a time) inflammation and a ulcer. He says its Crohns. Needless to say, I was shocked since the only symptoms I have experienced was very random constipation, loose bowels and occasional bloating. I had no idea that was the symptoms of Crohns since I've had them for years and thought everyone else did also.
 
 We agreed not to put me on any medications unless things got worse and decided he would do another colonoscopy in a year and compare the results. Went for another a week ago and he stated that there were no changes to the better or worst.
He suggested that I might want to start  5 weeks of prednisone along with starting Asacol and see him in about 3 months. Since I was still groggy from the sedative, it did't even dawn on me to ask him why now. Once I came off cloud nine I  left a message for him to call me. Of course, it's been a week and no return call. I would like to get some advice/input from this forum before I put in another call request. Here are my questions.
 
1. What are the key questions that I should be asking my doctor?
 
2. Does pred/asacol or any other meds used help heal the ulcer?
 
3. If there is scar tissue, will these meds be effective?
 
4. Should I start these meds as a precautionary step if things are still status que' or should I wait until symptoms are more prominent? 
 
5. Once you start Asacol, do you stay on it indefinately?
 
6. Why wouldn't he now what to start these meds if things haven't change?
 
7. How often do Crohns patients get followup colonoscopies?
 
Since Crohns and myself are now life partners, it appears as though this forum will be my life line to existing.
 
Sharon
 
 

sharon82657
Regular Member


Date Joined Apr 2007
Total Posts : 23
   Posted 2/17/2008 9:17 PM (GMT -7)   
Should have titled this Update from Newbie that needs input

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 2/18/2008 6:05 AM (GMT -7)   

I can relate with you when you said "I've had them for years and thought everyone else did also."  I was the same way.

I still consider myself new at this so I don't want to give you any incorrect advise. I do think the meds are important because if you are anything like me you may not have realized how sick you are since you have been this way for a long time.

I also started on asacol and my meds are still changing because my blood shows inflammation and I am still having lots of symptoms. So be prepared the first year might be a little tough because your Doctor needs to find the right meds for you.

As for things to ask him, ask how he plans to treat you. You also need to know what meds you may take next.

hopefully the experts here can give you more info....

good luck,

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 2/18/2008 8:13 AM (GMT -7)   
Hello, I'm new to this too. And Crohn's came as a surprise for me as well.
 
Do you have a follow-up appointment with your doctor? If not, I would suggest you do this. I also suggest you get a second opinion from a different GI regarding your treatment options. If you have choices in doctors, consider finding a new one...living with Crohn's you need a GI you like/trust/someone who returns your calls.
 
1. A few things I would ask:
(a) How will your progress be monitored, as you can't have scopes all the time and you don't have consistent symptoms? You can monitor you white blood count, ESR or C-Reactive Protein via blood tests if they are currently elevated.
(b) How he plans to treat you short and long term. And why those meds were chosen. Since you seem to have a mild case, I think you ought to be able to try Entocort instead of Prednisone. I thought Pentasa, not Asacol, was usually used for ileal disease?
(c) If this has not been done already... politely ask "Should I be tested for anemia/B-12/folate/Iron..." Several things that tend to be low if you have Crohn's.
 
2. Those meds will knock down the body's inflammatory process but don't necessarily bring about healing. Going on enteral nutrition (liquid diet) can help healing. I am guessing things like antibiotics or stronger drugs like remicade could since they can help to heal fistulas.
 
3. Meds will do nothing for scar tissue. At this point do you know if your narrowing is inflammatory or scar tissue? If it is scar tissue the only thing you can really do is chew well and avoid things like fruit skin, nuts, popcorn, etc. that might block you up.
 
4. That's up to you, but your doctor needs to be comfortable with what you're doing. I am in a similar situation: I have narrowing and ulcers at the terminal ileum, no change in bowel habits, but I did get fevers. My GI suggested Entocort and Imuran, but gave "doing nothing" as an option. I chose to avoid meds for now as I am just coming of a separate drug-related liver injury. I am on a 100% liquid diet, similar to Ensure, and barring no change in how I feel that's all I'm doing. My GI was OK with it and asked for frequent blood tests and a follow-up in three months.
 
I certainly suggest that you do something. In addition to meds, there are other things that could help: mild exercise, supplementary Omega-3 fatty acids, Vitamin E, probiotics, etc., and there are certain diets (Maker's, Specific Carbohydrate Diet) that people have had success with.
 
5. That's a question to ask your doctor. In general, yes, doctors use that to maintain remission...however, only for mild cases, and whether 5-ASA drugs actually do that is controversial (there is only good evidence for the immunomodulators Imuran and 6-MP, and anti-TNFs). My impression is people stay on Asacol indefinitely until they have another flare and move on to more powerful drugs.
 
6. I assume he wants to start the meds now because things did not get better. Having inflammation is not a good thing, even if it doesn't bother you. The chronic inflammation will create scar tissue, leading to strictures, for which the only option is surgery. Having active Crohn's in the ileum also can cause malabsorbtion.
 
7. I don't think there is a set guideline on this. Regarding the he risk for colon cancer, it is not as elevated in ileal Crohn's as it is for UC or Crohn's colitis. I had my first in December. Like you, the only way for my doctor to "really" know what's going on is by a scope. But he did not want another one until after a year, and after that, I don't know how often.
 
Best of luck


 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 2/18/2008 8:21 AM (GMT -7)   
you asked great questions and welcome to a wonderful place. my best advice is always to breath and try not to panic. the first few months can be bumpy with changes in meds, new tests, and new diagnosis. I was diagnosed immediately, like you, and then undiagnosed a few months later. now they really don't know and I have given up on a diagnosis and am dealing with diet instead.
just find a GI you trust, write down any questions, and if you read really scary things, remember that often the things you read are on a pretty extreme end. I know many folks like me who were diagnosed and then find the right meds or diet, or something just changes and they never see crohns again in tests. there is a vast continuim of what you might find.
keep showing up here, hugs, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 2/18/2008 8:22 AM (GMT -7)   
you asked about scar tissue, that seems to be the bulk of my problem due to several surgeries 20+ years ago. I can tell you more if you email me or just ask me about it in this post.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


sharon82657
Regular Member


Date Joined Apr 2007
Total Posts : 23
   Posted 2/18/2008 7:10 PM (GMT -7)   

I want to thank everyone who took the time to give me some much needed advice. Spoke with Doctor today and he said the reason for me going on the prednisone is because inflammation reacts quickly to it and the Asacol will help to keep it under control. I told my doctor that I would start the meds next week. I also told him that I had so many questions that I needed answers to that I wanted to schedule an appointment  in the near future. Thanks to all of you, I have many of the questions that I need. Will be posting some more questions on the forum about meds.

Knowledge is such a wonderful thing,

Sharon

 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/18/2008 8:44 PM (GMT -7)   
Sharon, please consider asking your doctor about Entocort. My daughter had the exact same symptoms you have. Entocort has kept her in remission for years.
 
If you have Crohn's confined to the terminal ileum, and your symptoms are mild, then Entocort might be a good option for you. Entocort works very much like prednisone. But it has far fewer side effects.
Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivit, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. Off SCD diet but wheat was iffy so back on SCD modified to include potatos and rice.   

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