New-ish Crohn's Patient- Advice Please?

[amymarie]

Hi everyone. Sorry in advance that this is so long but I'm feeling really frustrated and upset and could use some advice please. I"m not sure my doctor is handling things correctly and I don't know what to do. Here is my story.

In November of 2016 I started to have severe stomach pain to the left of my bellybutton, nausea, extreme weight loss, fevers, and diarrhea. I finally got in to see the GI doctor in April. At that time he did a colonoscopy which showed ulcers it the terminal illium. He biopsied them and it came back as inflammation consistent with crohns. He ran an IBD panel which came back positive for both of the anti-Saccharomyces antibodies, consistent with crohns. He diagnosed me with Crohns and started me on entocort, even though none of my inflammatory markers (C-reactive protein or sedimentation rate) have ever come back high.

In late may I was still having symptoms so they did a CT enterography which came back with signs of mild to moderate crohns in my jejunum. They added in Pentasa at that time, My two medications never fully worked, and every time they tried to taper me off the entocort, everything would come back, and they would raise my dosage again. So I was on a full dose of entocort for somewhere around 8 months. It worked well enough that I could tough it out, even though the pain to the left of my belly button and the nausea never fully went away, but my ulcers in the terminal ileum (where I only had mild pain) were healed during a follow up colonoscopy in September. I had multiple regular CT's (not enterorapghys) during this time,along with a gastric emptying test, and all of them came back negative for any sign of anything.

Until about November, I seemed to be doing okay. At that time, all my symptoms came back worse than ever, including mucous in my stool. They decided to put me on predinisone and scheduled a small bowel follow through. It took two weeks to get in for the small bowel follow though. The radiologist said he saw narrowing of the terminal ileum and a stricture. My doctor didn't believe him and had his radiologist look at the films. My doctor's radiologist also said he didn't think it was anything, but they decided they wanted to do an MRI to be sure. During this time, prednisone fully and completely healed my symptoms. I felt better than I had in years. No diarrhea at all, I could eat whatever I wanted without pain, no nausea, no fever, nothing. After three weeks on pred, they decided to try to taper my off. 14 days into the taper, I was horribly terribly sick, this time with blood mixed in with the mucous. they raised my prednisone back up to its original dose and again everything went totally away. Two months into being on the full dose of the prednisone, and again being symptom free for weeks, they finally got me in for the MRI enterograpy. The MRI enterography showed no signs of Crohns disease and apparently now my doctor is taking back his diagnosis of crohns disease? My latest clinical summary says they need to confirm a diagnosis of Crohns illitus, and if they can't, they need to send me somewhere else for a second opinion. He wants me off the prednisone, but won't give me any other medication other than Pentasa. I never pushed for the more hard core medications because I was afraid of the side effects (I have a 5 year old and a 7 year old and I dont't want anything to happen to me), but I can't go back to feeling awful, which is what happened every time we tried to taper off the entocort or now trying to taper of the prednisone.

I'm just so confused. Do I have Crohns or not? Is my doctor handling this well? What should I do? Any advice would be greatly appreciated.

Thanks,
Amy

 

[Scipio]

Welcome. I don't know whether you have Crohn's or not, but your symptoms and procedure results certainly are consistent with Crohn's.

What I don't understand is why your doc is keeping you on steroids for so long without transitioning to a maintenance medication - such as one of the biologics. You can't stay on steroids long term. The side effects are too severe. And Pentasa is primarily a UC drug that is next to useless for Crohn's.

As for your worries over the side effects of "hard core" drugs, (I presume you mean biologics) those side effects are real but they are rare. Many people have mild or no side effects at all from the biologics. Many people have been on the biologics for years with good success.

My advice is to start pushing for a transition to one of the biologics, or at least azathioprine. If your doc won't do that then switch to different GI - one who specializes in IBD.

 

[ronroush7]

I don't know whether you have Crohn"s disease or not but i an wondering if the reason the doctor didn't see anything is maybe you went into remission? You might want a second opinion.

 

[ronroush7]

You also might ask the doctor to do a colonoscopy.

 

[amymarie]

Scipio- At first I didn't want the drugs, and they kept trying to push them on me. They even already got preapproval for the Humira from my insurance company. The last time they tried to taper my of the steroids was so horrible that at that point I said I wanted either Imuran or Humira, which is what they were always trying to give me. At that point, the doctor said he had changed his mind and that he couldn't give me either of them unless I had a pill cam that showed active inflammation right now (while I'm still on prednisone. Is that even possible???) he couldn't give me either, and that also, I had to start tapering off the steroids again, without any other maintenance med then Pentasa. I started tapering 6 days ago and already the pain and nausea are starting to come back. It's not awful yet, but honestly, I'm scared. I'm waiting for preapproval for the pillcam from my insurance company, but honestly, my nurse says it doesn't look good. She said they usually only approve the pillcam for diagnosing Crohns, not looking for active spots of it after diagnosis. I'm really worried now and not sure what is going to happen.

Ron- The doctor says that while the colonoscopy would show if the ulcers were back in my terminal ileum, it wouldn't show where I'm currently having pain, which is too high up to reach (I guess in my the jejunum area). How is remission actually defined? Do people still have symptoms while in remission?

 

[ronroush7]

Scipio- At first I didn't want the drugs, and they kept trying to push them on me. They even already got preapproval for the Humira from my insurance company. The last time they tried to taper my of the steroids was so horrible that at that point I said I wanted either Imuran or Humira, which is what they were always trying to give me. At that point, the doctor said he had changed his mind and that he couldn't give me either of them unless I had a pill cam that showed active inflammation right now (while I'm still on prednisone. Is that even possible???) he couldn't give me either, and that also, I had to start tapering off the steroids again, without any other maintenance med then Pentasa. I started tapering 6 days ago and already the pain and nausea are starting to come back. It's not awful yet, but honestly, I'm scared. I'm waiting for preapproval for the pillcam from my insurance company, but honestly, my nurse says it doesn't look good. She said they usually only approve the pillcam for diagnosing Crohns, not looking for active spots of it after diagnosis. I'm really worried now and not sure what is going to happen.

Ron- The doctor says that while the colonoscopy would show if the ulcers were back in my terminal ileum, it wouldn't show where I'm currently having pain, which is too high up to reach (I guess in my the jejunum area). How is remission actually defined? Do people still have symptoms while in remission?

Pentasa only hits the surface of the disease. It isnt very strong. If you are still having symptoms you are not in remission. i don't know what it is though. Whether Crohn's or something else.

 

[Maya142]

I would get a second opinion. I would get copies of all your records - especially the first colonoscopy and CT enterography that showed evidence of Crohn's. Also the SBFT that showed a stricture.

See a GI who specializes in IBD or at the very least, one at the large university hospital.

It's crazy to take your diagnosis away because of negative tests while on steroids! It's not surprising that they'd be negative while on Prednisone, especially a high dose of Prednisone.

You need a doctor who understands that and who can put you on a maintenance medication. You really do not want to be on steroids for the long-term because they have very nasty side effects if used for a long time - increased infection risk, diabetes, glaucoma, osteoporosis, adrenal insufficiency etc.

If you do decide to stay with this doctor, I'd wait till you are off Prednisone for a while before doing a pillcam. I know that means feeling awful for a while, but it probably will not show much (or anything at all) if you are on a high dose of Pred.

 

[yellowamc]

Well Amy im sry to hear about u being sick. I started on Pentasa roughly 15 yrs. Currently I am back on Pentasa. I agree with getting a second opinion. In my case they section effected by my crohns could not be found by doing a coloscopy. Mine was in my illium. I can say and just being honest I have been on 3 different biologics remicade cimzia and entyvio. For me the side effects were to much to deal with. So that's y I am currently back on Pentasa.

 

[Jabee]

I don’t understand why your GI would un-diagnose you at all. After two months on prednisone I’d be surprised if you still had active inflammation. I’m also confused as to why he didn’t trust the radiologist who read your small bowel series! You’ve had a biopsy that was positive for crohn’s, a CTE that showed inflammation in your jejunum, and a small bowel series that showed narrowing and a stricture. I can’t imagine what your GI is thinking! The goal of treatment is to get you into remission (mucosal healing). You respond well to steroids; what does he think is causing the inflammation if it isn’t crohn’s?

As I write this I am reminded of when I got a second opinion about my crohn’s at my GP’s request. The second GI promptly told me I couldn’t have crohn’s or celiac disease (which I have in addition to the crohn’s) because like you, I respond very well to prednisone. He was very eager to un-diagnose me, but had no alternative diagnosis to offer. In your case the situation is reversed; your current GI wants to remove the crohn’s diagnosis because prednisone works so well for you!

I agree that you should take all your test results and imaging and get a second opinion. I think your GI is treating you very irresponsibly.

 

[ronroush7]

Agree.

 

[amymarie]

Thanks for the advice everyone. I'm scheduled for a pill cam next Monday now and if it doesn't show anything, I think he doesn't want to be my doctor anymore. I guess having visual ulcers in my ileum on colonoscopy, having them biopsied and come back as inflammation consistent with crohns, having the IBD antibodies panel come back consistent with crohns, having the CT that showed mucosal wall thickening of the jejunum consistent with crohns, and responding well to prednisone aren't enough to be diagnosed with crohns? I forced them to lower my predisone dose by 10mgs about 2 weeks ago, and down another 5mg today, so now I'm taking half of what I was. I started having pain at about 6 days into the taper and now, 14 days in, I'm having pretty bad pain, nausea, D, mucus in stool and everything. If I'm having symptoms, do you think they will be able to see it on the Pillcam, even if I'm still on some prednisone? Does it work that way? Logically, I would think if I'm having symptoms, it should show up...

 

[ronroush7]

Thanks for the advice everyone. I'm scheduled for a pill cam next Monday now and if it doesn't show anything, I think he doesn't want to be my doctor anymore. I guess having visual ulcers in my ileum on colonoscopy, having them biopsied and come back as inflammation consistent with crohns, having the IBD antibodies panel come back consistent with crohns, having the CT that showed mucosal wall thickening of the jejunum consistent with crohns, and responding well to prednisone aren't enough to be diagnosed with crohns? I forced them to lower my predisone dose by 10mgs about 2 weeks ago, and down another 5mg today, so now I'm taking half of what I was. I started having pain at about 6 days into the taper and now, 14 days in, I'm having pretty bad pain, nausea, D, mucus in stool and everything. If I'm having symptoms, do you think they will be able to see it on the Pillcam, even if I'm still on some prednisone? Does it work that way? Logically, I would think if I'm having symptoms, it should show up...

If you are worse, I would think they would want to take the prednisone back to what it was or more than it is now. I dont know about your question

 

[amymarie]

Well, the pill cam results came back and showed twelve separate areas of inflammation, ulcers and erosions scattered throughout my small bowel. They have re-diagnosed me with crohns and recommended I start humira immediately. I asked if it would be possible to do anything with less harsh side effects and they said I could try Imuran, but the doctor really recommends Humira. If you had to pick between Imuran and HUmira, which would you pick? I'm 37 and have a five year old and a 7 year old and would prefer not to take anything to dangerous until I'm older...

 

[ronroush7]

Well, the pill cam results came back and showed twelve separate areas of inflammation, ulcers and erosions scattered throughout my small bowel. They have re-diagnosed me with crohns and recommended I start humira immediately. I asked if it would be possible to do anything with less harsh side effects and they said I could try Imuran, but the doctor really recommends Humira. If you had to pick between Imuran and HUmira, which would you pick? I'm 37 and have a five year old and a 7 year old and would prefer not to take anything to dangerous until I'm older...

Everyone is different but I was on Humira a couple of years ago and didnt notice any side effects. I am on imuran and it may or may not have caused some cancers i have had removed.

 

[crohnsinct]

My daughters are both on Remicade (another anti tnf biologic). It has worked wonderfully for both of them. One is in her 6th year with it and the other coming up on 2 years. Neither one of them have had any problems with the drug. As a matter of fact, they were both away on a youth trip where 10 of the 20 kids came back with mono but not my two. My one daughter shared a bed with her cousin over the holidays. Cousin woke up with flu and vomitting everywhere...my daughter was fine. Honestly, they are the healthiest people in the family.


Read the risks and side effects of Imuran. If you ask me it is way scarier than any of the biologics.

If you are looking at the especially scary risk of HSTCL, is very, very small and actually occurs more with exposure to azathioprine (Imuran) more than the biologics (without ever using Imuran). They have actually found that teen boys are at a higher risk and for this reason most pediatric GI's will not use Imuran anymore. But the risk of this for any person walking around is 2 in 10,000. If you use Imuran, your risk goes up to 6 in 10,000. Look at the real numbers rather than percent increase in risk.

The biologics work very well to control disease. Control is key. Under treated disease results in surgeries and could very well lead to cancer due to ongoing inflammation. With the introduction of biologics, the surgery rate has gone down immensely.

Here is an online tool to help you with deciding on treatment. Good explanation of meds, risks and a handy decision tree at the end. Of course make all decisions with your physician's input but handy none the less.

https://ibdandme.org/#

 

[Jabee]

I’m perversely glad the pill cam showed something! Are you sticking with the same GI? Humira will be my next medication. Azathioprine (Imuran) and 6MP gave me pancreatitis so those are out. If your entire small intestine is affected, I might go for the stronger medication like humira since you really want things to heal. Are you on prednisone right now? It can take a while for both humira and Imuran to work so you should be on something in the meantime.

 

[Maya142]

My daughter has been on both biologics and Imuran. Imuran scares me way more than biologics. She has had NO side effects with biologics - no increase in infections or anything like that. Biologics are actually now considered to be pretty safe drugs.

Imuran scares me because of the cancer risk - it is associated with non-melanoma skin cancer and my daughter had to have a mole which doubled in size while she was on Imuran removed, because her doctors were worried about cancer. It was benign but the whole experience was scary.

It is also associated with a higher risk of Lymphoma and very, very rarely it is associated with HTSCL, a cancer that was found most in male teens and young adults.

When my daughter was on it, she got many infections. She was on it in combination with a biologic, but she has been on other immunomodulators plus a biologic (MTX, Arava) and has not gotten a lot of infections. With Imuran, she had 7-8 sinus/throat infections in one year and the last one was a staph infection, which is uncommon in the throat. The antibiotics for the staph infection led to CDiff, which led to a Crohn's flare. So overall it was not a good med for her.

However, everyone is different and you can't really know how meds affect you till you try them.

Good luck!!

 

[my little penguin]

Ds was dx at age 7
Took the sister drug 6-mp at dx
Elevated his liver enzymes
Found out later ped GI no longer will put patients on 6-mp or imuran due to increased lymphoma

Ds took humira for over 5 years no issues
Only stopped since it stopped working (he had to stop due to non Crohns surgery and when he restarted it didn’t work )

He is on Stelara now

 

[RenLPC]

treating your Crohn's

You have to look at your nutrition, that's the biggest piece of advice I can give anyone who is confused about how to handle their Crohn's or any IBS. I understand that some people take meds and it can be helpful, but so many times it's not and the side effects can be serious. I used to take Imuran, Asacol, and Entocort. None of those made one bit of difference in my symptoms. So I started to read ingredient labels on all of my food, cooking more food at home, and started incorporating more foods that have natural anti-inflammatory qualities. Make smoothies a part of your daily routine. Obviously the steroids did something for you, they controlled the inflammation, and you can't stay on steroids forever, so start controlling the inflammation in healthier ways, get to the root of the issue. Maybe you have to be on some meds for now while your symptoms are more severe, but tapering off could be an option with the right nutrition routine. I've been treating my Crohn's this way for the past 7 years and have had 0 flare ups, whereas before I had flare ups so severe that I was vomiting and had to have surgery. Everyone's different, go with your gut, do what's right for you.

Ren