Doc wants me on Remicade, but I feel fine

[abovetheclouds]

Hi everyone,

tl;dr for those who don't want to read the wall of text below: I feel like I am in remission still, but doc says I need to start taking Remicade or I will need surgery shortly. I would prefer to try switching to paleo diet for a few months first, wondering if that is ok

My name's John. I'm 22 and was diagnosed with Crohn's at age 13. At that time I experienced severe urgency (needing to get to the bathroom without notice within 1 minute or so), severely stunted growth, diarrhea, bacterial infection, and had two abscesses removed. After the diagnosis I was put on Asacol and 6-MP and within a few months I went into remission. A few months later I was taken off Asacol and have been taking 6-MP to this day.

After initially going into remission, I have been in "remission" since and have experienced only minor symptoms - occasional urgency (usually right when I wake up), occasional blood in stools or diarrhea. I'm incredibly lucky to have made it this far with zero abdominal pain.

Recently I learned about systemic symptoms and how Crohn's manifests itself throughout the body. As long as I can remember I have lived with these symptoms: anxiety / social anxiety, constant fatigue (I never feel well rested in the morning and have difficulty getting up), inability to focus, TMJ / clicking jaw / tenseness in my face and neck, and swelling of the joints in my knees (normally does not affect me unless I run, so I bike for exercise instead). I would love everyone's opinion on whether all of these symptoms can be caused by Crohn's.

Six months ago I began feeling a minor recurrence of symptoms (namely, increased urgency) and told my doctor. He prescribed me Budesonide and within a few weeks I felt like I was losing my mind. My anxiety increased significantly, and I also began to feel depressed. I stopped taking the steroids, and he scheduled me for a scope.

During the procedure he saw inflammation, ulceration, and could not fit the scope through the terminal ileum. He recommended that I begin taking remicade and taper off the 6-MP over the course of a year. He also claims that if I do not switch medications, I will need surgery soon (he did not give a timeframe, but I will ask next time I see him).

Two years ago, I started using cannabis daily, and have continued to this day. When I first started, I noticed a marked decrease in my symptoms. I believe that it plays an important role in treating my disease. When I brought this up to my doctor, he responded by saying that I'm probably self-medicating my anxiety with it, but that it wasn't important in relation to Crohn's.

My doctor also claims that diet is not important. I know a lot of you have heard the same thing, and it is incredibly frustrating. I *know* that it plays a significant role in how I feel day to day. I am now on day 4 of the paleo diet (with some dairy still allowed) after reading testimonials on this forum. I think it's too early to decide if it's working, but I really do feel more clear headed, my muscles feel relaxed, and my anxiety is lessened. My stools are also quite a bit more normal looking than they were before. I think it's helping.

My plan now is to continue with the paleo diet for two weeks, and if I continue to see improvement, then stay on it for good. In the meantime, I want to get a second opinion from another doc since I have basically lost trust with my current one. I will show him the results of the scope, and ask again if I will be ok to continue the new diet for 3 months then do a follow-up scope to see if the ulceration and inflammation has subsided. Does this sound like a solid plan? Am I risking too much by waiting that long?

I want to be cautious and go on medication if absolutely necessary, but I really feel the same as I have for the past 10 years or so symptom wise. I have minor urgency in the morning but no pain or diarrhea at all (keep in mind however the systemic symptoms I described above still remain an issue).

Thanks everyone for taking the time to read this all the way through and for your support. I'm looking forward to getting to know everyone!

 

[DJW]

Hi John and welcome.

Diet works well for some peoples symptoms. This good and bad. Bad because just because we don't have problems doesn't mean remission (no inflammation). Untreated or under treated crohns can cause serious complications.

When I was first diagnosed meds didn't work. If anything could go wrong it did with me. I've had numerous surgeries, blockages, bleeds, ICU stays to last me 3 lifetimes. I wish remicade was around at the time. Proper treatment is crucial.

 

[SupportiveMom]

I do hear you on being cautious to start Remicade. Feeling fine can be deceiving though. Your doc might be seeing inflammation and further issues that will cause issues for you no matter how you change your diet. Press him/her on why he is chosing this form of treatment. There are some studies that show a "top down" approach achieves remission quicker. (Top down = strong meds 1st line of treatment) Some docs prefer the bottom up approach. There are other options. Anti TNF drugs have been a life saver for many of us, but it isn't the answer for everyone.

 

[InkyStinky]

Hi there! Saw you requested additional support, so here's my 2 cents!

During the procedure he saw inflammation, ulceration, and could not fit the scope through the terminal ileum.

This would be very concerning to me. As the others have said, "feeling fine/typical/stable" often doesn't coincide with remission.

Besides the colonoscopy, have you had other recent tests? Labs to check for inflammation levels (e.g., WBC, ESR, CRP)? Any imaging, small bowel follow-through, etc? Tests like those may give you a bigger picture view of your disease activity/inflammation levels.

Do you have an appt for a second opinion?

Edit to add: my signature has a link to a trial going on in Vancouver. Not sure if you'd qualify or if your current situation would allow you to travel (looks like the trial's covering most people's travel expenses), but it's something I'm super excited about as a potential for a longer-term solution than the currently available meds.

 

[IofNewt]

My doctor also claims that diet is not important. I know a lot of you have heard the same thing, and it is incredibly frustrating. I *know* that it plays a significant role in how I feel day to day.

I am pretty lucky in that my doctor doesn't try to sell the idea that what I eat plays no part at all in my problems. He has repeatedly hooked me up with nutritionists as much to help me sort out what to eat as to give him a clearer idea of what I eat.

I cannot even count how many times I have totally changed my diet trying to cope with my flare ups. In the past 15 years or so, I have been banned from eating fiber-rich foods for close to 12 of those 15 years! And there is so much food filled with fiber that I just lovelovelove. Very frustrating!

Also, my BF, is a chef so he tends to become slightly frustrated at not being able to flex ALL of his skills for me.

 

[abovetheclouds]

Besides the colonoscopy, have you had other recent tests? Labs to check for inflammation levels (e.g., WBC, ESR, CRP)? Any imaging, small bowel follow-through, etc? Tests like those may give you a bigger picture view of your disease activity/inflammation levels.

Do you have an appt for a second opinion?

My doctor has never discussed labs to check for inflammation levels. I didn't know that was possible until discovering this forum recently. I get blood drawn every 3 months to make sure I am ok to keep taking 6-MP, but don't know exactly what they are checking for.

I'll make sure to ask about this at my next appointment - I have an appt for a second opinion scheduled for the start of September.

Besides that I had a small bowel series done about two months ago. The doctor was unable to get a clear view of my ileum, so there were no results from that test.

I'm now on day 8 of a modified paleo / SCD diet, and overall I feel great so far.

 

[araceli]

I am no expert and the following is just my opinion. I have a girl who does not follow the usual' crohn's symptoms, but we have learned that even if she feels good, things may not be fine inside. Food is not a problem for her but we try to avoid spicy and greasy foods. Most likely the blood test you are having are to check for ALT and AST levels to see if 6-MP is not causing damage. They should be checking for anemia, plalets, the ones that InkyStinky mention above, etc. Another test that will help is fecal calprotectin. Make sure you take any test result you have to your second opinion appointment. Good luck and let us know how it goes.

 

[Tesscorm]

My son was in a similar situation. Last year he transferred from a ped GI to an adult GI. At the time, since diagnosis, his only treatment had been exclusive and then supplemental EN. This had worked well and took away all his symptoms. He looked and felt great. However, MREs had shown continued low level of inflammation. His adult GI was adamant that if he did not start additional treatment, it would likely result in surgery. His recommendation was remicade. MREs since starting remicade have shown significant improvement. But, it was definitely a tough call to make considering he felt and looked fine. :ybatty:

I don't think your GI will be able to give you a timeframe. It seems there are some that can have simmering inflammation for years and little damage is done; in other cases, inflammation can suddenly and quickly cause a problem the results in surgery. Very frustating!!

I had wanted my son to try LDN (low dose naltrexone) as there are a number of members here who have had success with it, it is low risk, very inexpensive medication. However, while it is a drug that has been around for a long time, it has in the past been used for other illnesses and there are limited studies in its effectiveness for crohns. For that reason, many GIs hesitate to prescribe it. The greatest risk, I believe, is while 'testing' if LDN works for you, inflammation can cause further damage and put you at that risk. If you'd like more info on LDN, there is a subforum under the treatment section.

As my son's initial treatment was exclusive EN (enteral nutrition), we did work with a dietitien and what we've been told about diets/foods is that foods can help you control symptoms (ie some cannot tolerate spicy foods or fibre, etc.) but food will not control a flare nor cause one. For my son, we've only eliminated seeds and nuts - all else seems to be fine. The dietitien also mentioned that many people feel better when they are on these diets; she believes they are feeling better, however, she believes a big factor is simply that they are eating 'healthy' and significantly cutting back on 'unhealthy' foods while following these diets. Keep in mind, we haven't actually tried any diets such as paleo or SCD - as my son exhibited minimal symptoms once he started his treatment, we didn't try to control symptoms with diet. One thing that I do believe has helped my son, is that he was on supplement EN for two years (1500 cal/day of nutrition formula plus a regular diet), since starting remicade, he continues to drink 1-2 Boost shakes per day. I do believe that the nutrition he gained from the enteral formula and now from the Boost shakes have helped to keep him healthy and, perhaps, that has helped keep his crohns under control?? (The nutrition certainly hasn't hurt. )

Re the other symptoms you've noticed - systemic symptoms are called extra-intestinal manifestations (EIMs). There is a subforum for these symptoms and you'll probably find some info there.

Good luck with the second opinion - definitely worth doing! While you can't foresee the future, having all the information you can find, will help you in making a decision. :ghug: