Doctor only wants me on Pentasa after resection...

[jonathan]

Hello All,

I have had Crohn's for 5 years, I just turned 24 and I had an ileal resection with appendix removal on June 26th. They took out 6 inches and it was an open emergency procedure of sorts. I saw my GI for the first time post-op today and he thinks that it is a good idea to stay on only Pentasa until my December colonoscopy. I was on Pentasa and had just started Cimizia 8 days before the flare that sent me under the knife. I needed surgery because the CT Scan showed a small amount of free air in the small bowel. I have read all of the research stating Pentasa to be barely better than the placebo at preventing post-op recurrence, and that it is in general a weak drug for Crohn's. I was prescribed 4000 mg of Pentasa (double the pre-op amount) after surgery and he wants to lower it to 3000mg. I really wanted to start Cimzia again as I believe using the big guns early will greatly lower my recurrence rate (I read a great study that showed remicade was great at this).
I have adopted a Paleo style diet the past 2 weeks, although I might still have gluten free pasta now and then, and I have a daily greek yogurt, ensure shake, and 8 oz of kefir and I'm hoping this will help a lot.

My question is if there are any people out there who were on more potent drugs before surgery and were only on Pentasa or another 5-ASA post-op and how long you were symptom free? I'm just a little worried staying on only Pentasa is like begging the Crohn's to come back. If the colonscopy in Dec shows any inflammation I'll be back on Cimzia. I also have another appt in Nov. Also, I have had a few episodes of discomfort after meals since my surgery, it could very well be from something I ate, but I thought that my intestines would be able to tolerate almost any relatively safe foods for a while, am I mistaken? Thanks for any info you can provide. This forum has been invaluable to me this past month!

-Jon

 

[Patricia56]

You are right that mesalamine (Pentasa) has not been found to have long term efficacy in preventing post-operative recurrence of Crohn's.

http://www.ncbi.nlm.nih.gov/pubmed/21172253

Unfortunately, nothing else has been found to work any better except biologics which docs are reluctant to rx if there is not strong evidence that they are needed.

You could get a 2nd opinion.

You might also get a copy of this article and take it with you to your GI and ask if the findings apply to your case:

http://www.ncbi.nlm.nih.gov/pubmed/22105722

Natural history of ileo-caecal Crohn's disease after surgical resection. A long term study.

"Conclusion:

Surgery is an excellent treatment for patients with isolated ileo-caecal CD. The overall long-term outcome is good: by 10 years after operation approximately 50% of patients are free of clinical recurrence and over 70% do not require further surgery."

 

[Heather_D]

Hi Jon - My GI did something similar. I was on Pentasa and Cimizia before my surgery in March, however now I'm just on Apriso (another 5-ASA med that doesn't require I take as many pills/day as the Pentasa). I was on Cimizia for over a year and a half though, so I think my GI doesn't think it worked for me. He wants me to do a scope early next year to see if there are any early signs of inflammation/returning of the disease which at that point he would probably move me to a 6MP. I'm less than 6 months out, but I have felt really good since the surgery. I know there are a few people on here who are on no meds pre-op and have been in remission for several years. I think it really comes down to how agressive your disease is. In the end I think one of the hardest things about CD is that is can effect people in so many different ways that it can be hard to treat. Good luck and hopefully a few people that had surgery more than 6 months ago will also provide some feedback!

 

[jonathan]

Thank you very much for posting those studies! I do believe the second study you posted relates to me as my Crohn's has always been isolated to the ileal-cecal area. That study really gives me some great hope!
I was/am still a little worried about only being on Pentasa because I was initially prescribed it after my diagnosis (an obstruction that led to my first hospitalization), and 4 weeks later I was in the hospital with another obstruction. Imuran did wonders for me for 4 years, and when it started to lose its effectiveness, I was put on Pentasa + Imuran, and I experienced a flare 6 months later which most likely led to my surgery.
I know most folks would love to hear that they just need to be on only a very mild drug after surgery, but after researching this disease so much recently, I'm very aware of the course it will most likely take and I think the biologics will really delay its course.
I also understand the desire to wait and see how I'm doing after my colonoscopy before prescribing the biologics, as we don't want to exhaust my options before any other drugs become available.
This gives me an opportunity to see if diet really has a positive effect. I have read a great study done in Japan about the Semi Vegetarian Diet being very effective in preventing endoscopic recurrence and this diet contradicts the Paleo diet and SCD as it allows a lot of brown rice and other grains. I had a very Paleo approved Pork Porterhouse of sorts last night and it gave me some discomfort, so I think I'm going to take the best ideas from a few diets and implement my own whole foods (no bread) approach.

I read somewhere of a lady implementing this same diet approach post-op who had tremendous success. Has anyone else made significant dietary changes post-op with noticeably positive results?

 

[Heather_D]

I haven't made any significant dietary changes, however I do notice on days that I eat healthier and control portions that I do feel better. However, I think most people (even those without CD) typically say the same thing when making efforts to choose healthier food optoins.

 

[jonathan]

Heather: Thank you for your story! I noticed that drug (Apriso) popping up a few times on the forum as I researched it last night. That is great that you are doing well!
I'm not quite sure how aggressive my disease is...I had 4+ years of symptom free Crohn's from April 2007 (a month after my diagnosis) to August 2011. Last fall was fine with a some episodes of discomfort, but Feb and March weren't too much fun and a CT scan showed a good amount of TI inflammation. I have never had any diarrhea or other Crohn's manifestions, so I recognize how blessed I am in that regard. I have been hospitalized 4 times with obstructions in the 5 years I've had Crohn's, which I view as a lot (though the first 2 were at the time of my initial diagnosis).
I think that staying on Pentasa might be the best course of action until my 6 month post-op colonoscopy. I have just been a little nervous after my surgery regarding this disease and starting the school year in another week (I'm a teacher) will relieve a lot of my stress, as all I do right now is think about my gut! Getting back into running will also help.
Heather: Do you follow any sort of diet?
I thought I made great strides last year with my diet, but in hindsight, I ate an awful lot of bread, cereal, drank a lot of gatorade and still consumed a lot of refined foods and sugar, so I think the elimination of those will do me good.

 

[jonathan]

Heather: I just noticed that you posted right before I finished my last post, sorry for asking the diet question again! Thank you for that info!

 

[Heather_D]

I'll admit that I'm not always that great with my diet. In general I'm pretty good during the week; although I haven't elimianted anything. I have a bowl of cereal normally in the morning with skim milk. Then I will normally have fruit or greek yogurt as a late morning snack and more recently I have been having a salad for lunch. Took me a little while before I had a salad post-op since I wasn't able to eat them for several months pre-op as they caused me a great deal of pain. I then typically have some crackers with peanut butter or something else later in the day as a snack before dinner. Dinner is probably my worst meal of the day. My husband and I very often will just eat a protien (chicken, steak, etc..) without any sort of vegatable. Weekends I am still really bad about eating things I shouldn't. We don't have kids yet and we like to go out.

I have read that a lot of people do well changing their diet. Maybe at some point I'll be there. I think the hardest part was that for so long pre-op I couldn't really eat anything. Then once I was finally recovered a bit form surgery I've had a bit of trouble being as controled as I was before. I'm sure I wont be going out much after we have kids either, so that will change my diet a bit. We were told that 6 - 8 months after surgery would be a good time to consider kids since I'm in remission; we'll see.

I give you credit for having so much control at 24. I was diagnosed at 23 and I wasn't very good for a while with diet or taking my meds. I sometimes wonder if things would have been different if I was better from the beginning with the Pentasa, but there is nothing I can do about that now. So, I just try to be really good with my meds post-op, I think of it as a second chance!

 

[DustyKat]

My daughter had an ileocaecal resection 6 years ago and has been in remission since that time. Following her surgery the one thing she has never been able to tolerate, has her running to the loo, is oils whether they be cooking or salad oils. Over time she also lost her desire for red meat. IIRC I think she found it just didn't right, sat heavily and difficult to digest.

Two years ago she went off all red meat, she soon found that mostly what she ate was fish so she was basically pescatarian. This being the case she decided to move to vegetarian, then vegan and then a few months ago raw vegan. Her first attempt at this diet failed as she was unable to maintain her weight but she tried again about two months ago and is having more success this time. She has also cut out all refined sugar and caffeine.

Her diet is extreme and certainly would not suit everyone. Does it make a difference? As far as her disease goes I don't know as he was and still is in remission. How does it make her feel? She says she feels well and energised on it, she does look well. She also exercises daily in the form of running.

Dusty.

 

[Heather_D]

Thinking more about this, I do limit certain things. One item I seem to have an issue with post surgery is nuts. If I only eat a few in something (like chocolate ) I don't seem to have an issue, but only a couple months after surgery I ate a whole bunch and noticed blood the next day. I might be able to eat them eventually when I'm more healed, but if not I don't think this will ever be a huge issue.

I also do not eat a lot of red sauces, such as pasta sauce. This has been a trigger food for me for a while. I am fine if I eat a small amount, but it causes issues if I eat too much; such as pasta with sauce for dinner. My GI said I could try to eat it again now post-op, but I am a bit hestitant. I'm sure every once in a great while will be fine, although if I had it my way it would be dinner once a week!

 

[jonathan]

Thank you Dusty and Heather! The consumption of a lot of meat that Paleo advocates doesn't sit well with me, and as a long distance runner, cutting out all grains would keep my weight way too low.
And if I am no longer consuming the high sugar, high calorie sports drinks and energy bars/gels, I need to get a lot of calories somewhere, and I don't want to eat a lot of pork or red meat, none really.
Before my surgery and throughout my Crohn's course I really haven't had any food limitations. I noticed movie theater popcorn, soda, coffee, nuts, and spicy foods might cause an issue if consumed in excess, but I truly believe diet plays a component and wonder if Imuran would have stayed effective longer if I didn't eat like utter crap in college.
I have to believe a whole foods approach is best. A country like Korea or Japan whose diets are mostly vegetables and fish have only just recently developed Crohn's cases as they adopt more of the SAD diet.
I am going to pass along the studies on this thread to my doctor, as I am excited about the ileal-caecal surgery findings, and hope that my diet and Pentasa keep me well.
Heather, I understand the love of chocolate...I have switched to buying a single bar of at least 70% cocoa dark chocolate from Trader Joe's for the week...so I can still enjoy a little bit of the good life!

 

[jonathan]

Dusty: Did your daughter eat any grains when she began her transition away from meat? I won't be eating much chicken breast any more, as I believe it might cause me some issues, and will be focusing on fish. I also will focus on brown rice and gluten free vegetable pasta. This is completely against Paleo or SCD but Asian countries have consumed a lot of rice and have had very low incidences of Crohn's until recently (probably due to the westernization of their diet).

 

[DustyKat]

Yes, she always ate grains. When she first went onto raw vegan she couldn't maintain her weight so had to go back to grains. I think she was mainly eating rice and oats plus quinoa.

The other thing she does is juice daily. She makes about a litre and consumes it over the day. She doesn't juice fruits as it concentrates the sugars too much, although she will add the juice of a lemon to whatever she is making.

Dusty.

 

[jonathan]

Thank you Dusty, that is good to know. I'd like to keep my grain consumption to a few select grains. I have had 750-1000 ml of fresh vegetable juice daily (80-90% carrots) for the past month now. I was juicing off and on last year but I was never really committed. I think this can be of great benefit.