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07-15-2012, 10:17 PM   #1
jonathan
 
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Location: Troy, Illinois
New to the Forum

Hello All,

I'll try to summarize my battle with Crohn's as briefly as possible. I was diagnosed in March 2007, the end of my senior high in high school, after about a month of troubling stomach pains. What finally did me in was an obstruction and they diagnosed me with a laparoscopy, as they wanted to investigate whether or not by appendix was inflamed. I started on Pentasa and Prednisone after being discharged, but had another obstruction 4 weeks later. We went to a different hospital, a children's one, and I switched to a pediatric GI doc who began me on 125 mg of Imuran and I continued Prednisone for another 3 months.

After those episodes, I experienced 4+ years of relatively few symptoms. I even thought for a while that maybe I didn't have Crohn's, as I have had an episode of diarrhea twice in the last 5 years. I also ate whatever I wanted in college and only experienced mild discomfort if I had too much coffee, soda, or movie theater popcorn. Well, last August, on my birthday no less, I had another obstruction. I thought that this was maybe due to the stresses of getting married, just moving in with my wife-to-be, and beginning my first year of teaching. I had to add 2000 mg of Pentasa to the regimen and was also put on Entocort. I was initially dedicated to cleaning up my diet, and I began juicing a little. I wasn't very strict and began drinking coffee everyday and cheating on healthy eating. I experienced more discomfort than I would have liked during the fall months.

This February I began to flare a little. Also, I became very anemic, and after a bone marrow biopsy, a hematologist concluded that Imuran was killing my RBC production. Imuran had probably lost it's effectiveness due to the increased discomfort and previous August flare. I was put on 40 mg of Prednisone the middle of March and stopped Imuran April 1st. A CT scan in March showed inflammation in the terminal ileam, the only spot that my Crohn's has affected. I received a 1 unit blood transfusion in early April and my blood levels returned to an acceptable count in early May. The plan was to then stay on Pentasa and Prednisone start Cimzia later in the summer, so I could give my body the chance to produce more blood.

I was able to start running again May 1st, I am a marathoner and I haven't noticed any negative effects with running and Crohn's, and I thought all was going to be fine. I started to experience a little pain and discomfort at the end of May, so I asked my GI office if I could begin taking Cimzia in June. I started Cimzia June 18th, and noticed the discomfort vanish quickly. Unfortunately, it was a little to late. I was hospitalized June 26th for another obstruction and a CT showed that I also had a perforation with a fistula trying to lead into the appendix. I had an ileal resection the next day. The surgeon removed 6 inches of the terminal ileum (including the cecum and appendix). After a 6 day stay, I was released and began the healing process, with another interruption. I was having normal bowel movements 4 days after the surgery and they continued when I went home, but a week after my discharge I started experiencing stomach pain one night and had a few spells of vomiting during the day. I was again hospitalized with possible ileas, with a possible "kink" in the bowel. No one really know. The vomiting really opened up the bottom part of my incision site and I was placed on antibiotics. After 48 hours I was released and I am at home again. I have also been pumped up to 4000mg of Pentasa and will be off of Prednisone in a week. I corresponded with a different GI doc than my own in the hospital, as mine has been overseas since April with the Air Force. I see him Aug 10th. That basically summarizes my experience with Crohn's. All that being said, I have a few questions. I have poured over this forum the past few weeks, especially the surgery and diet sub forum, and I really appreciate the knowledge you all have.

1. Given that I had a rather long remission, is it plausible to believe that I will experience another prolonged remission? I know surgery can't cure anything and I know of all the percentages of Crohn's returning in the next 5-10 years and that I have a 50% chance of another surgery.

2. Also, I understand that the majority of people that use these forums are folks that experience many difficulties, and reading through many has me worried about my future ability to function. Everywhere I read it says that Crohn's patients can lead normal, productive lives. I'm worried that since I've had surgery now and I'm only 3 weeks shy of 24, that I am now sort of a serious case. Do you believe that the majority of Crohn's patients can lead normal lives? I would like to think I have a good shot as my only symptoms have been abdominal pain and I still don't have diarrhea, even after surgery.


3. I want to really change my diet to one that is almost all natural. The only meat I want to eat is deli turkey breast and chicken/fish. I have been juicing carrots and spinach leaves pretty regularly and I believe that this should be a staple for me; 2-8 oz servings a day. I would like to start eating more salads in a month or so, I haven't noticed any intolerance to salad in the past. I truly believe that diet can help my symptoms, and I want to follow a very clean one.

4. And finally, should I expect my Crohn's to get progressively worse? I have had a rough year, and I understand that surgery can alleviate my symptoms for a while, and that I can start Cimzia again in the future, and if that fails, there will probably be more biologics or other drugs available. As a teacher, coach, and husband, I am worried about my future right now. I had 4+ years of feeling great and I just don't want to except a live of debilitating disease. Also, if Imuran had such great results for a while with no side effects until the end, is it responsible to think that the other drugs will do the same?

Sorry for the long post. I am kind of scared right now and I can't ask my GI any questions for another 4 weeks. Thanks for any input you can provide!
07-16-2012, 06:52 AM   #2
Angrybird
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Hello Jonathan and welcome to the forum, I am sorry to hear about the recent difficulties you have had and the resulting op How are you doing now?

Everyone is different with how this disease behaves and having the op does not necessarily mean that you are now going to have continous problems, the key is to be on a working treatment regime that keeps the inflammation at bay so no further scarring can occur. I do think it is possible to lead a normal life once you have found a good balance with this.

If I'm reading your post right this would be the 3rd time you have been given Pentesa? If so one thing I am wondering is if this is really going to be strong enough to keep things settled for you given that problems have arisen when you were previously on it......I would keep a very close eye on things and if you start to notice the slightest change in how you are feeling then get onto your doc.

Diet is tricky with docs being unable to decide whether it is benificial or not, I personally think it is definetly worth looking into and for some here it can really help. Please do check out our diet and sups forum to get info and what things people here are trying: http://www.crohnsforum.com/forumdisplay.php?f=17.

Wishing you all the best

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-16-2012, 08:11 AM   #3
jonathan
 
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Join Date: Jul 2012
Location: Troy, Illinois
Thank you AB for the reply! I am feeling pretty good now. My abs are sore for the vomiting, but my bowels are normal. I am sticking to a low fiber diet right now, though I have been having fresh vegetable juice twice a day my Grandpa prepares for me. I read that fresh vegetable is very easily digestible. I don't believe Pentasa to be an effective drug. In fact, my GI who I see again in 4 weeks, also doesn't believe it to be highly effective alone. I don't know if we should jump to the biologic again or maybe try 6-MP. I'll definitely bring it up. I think the rationale for just increasing the Pentasa was because all of the diseased ileam was removed so there was no signs of Crohn's after the surgery, so hopefully Pentasa will keep any inflammation to come at bay.
AB: I see that you had a resection was well, have you been symptom free the past year? I read that 85-90% of patients will be symptom free the year following an ileal resection.
07-16-2012, 09:02 AM   #4
Angrybird
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Hi there, after the op I felt really good for about 8 weeks, I then started to notice the odd grumble and then leading up to xmas last year I was having one of the worse flare ups I have ever experienced - I was not on ANY meds at this stage so that might explain it

After a colonoscopy on the 20th Dec (what a lovely early xmas pressie) I was put on the pred which got me through me turkey dinner and then I re-started the Aza for the 2nd time in January. I had problems with this - the tum was fine it was the side effects that was the issue - so have ended up on 6-mp and I have been on this for about 2 months and so far so good
07-16-2012, 08:58 PM   #5
David
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Hi jonathan and welcome to the community I'm glad you joined!

It's understandable that you're scared Crohn's is so uncertain. I wish I could answer your questions, unfortunately I'd really just be guessing.

What I do know is that one thing that may help is taking control. Learn everything about this disease you can. The treatments, the alternative treatments, the vitamin and mineral and nutrient deficiencies, the supplements, the diets, and the list goes on. Become as much of an expert as you can. What this will do is allow you to advocate for yourself and get the level of care you deserve. Our doctors are usually really good, but we can't expect them to know everything. But if you use this community and other resources to educate yourself, it allows you to open a dialogue with your doctor and to try various things that can, in my opinion, increase the chances of controlling your disease and prolong any remission. We're here to help you with that in any way we can.

All my best to you!
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