Another Crohn's Newbie

[mamalana]

Hi all,

I was diagnosed with crohn's in Mar. 2014 after having a lifetime of stomach issues. I had been told I had IBS and that pain, bloating, alternating constipation/diarrhea, occasional bleeding, nausea, etc., were all par for the course. Beginning in Jan. 2014, I became lethargic, began passing out for no apparent reason, and was having heart palpitations like crazy. My blood pressure was ridiculously high. Finally, after passing out for the third time in three days, my husband insisted I go to my GP (this was a Monday). He immediately noticed that I was extremely pale and upon my mentioning having passed blood, he made a call and sent me for an emergency appointment with a GI. From there, the week was a whirlwind. On that same day, tons of bloodwork, SuPrep, emergency colonoscopy at 7 a.m. Tuesday. Diagnosed with Crohn's immediately after and had nine different Rx placed in my hand. On Thursday I was in the hospital receiving a blood transfusion (severe anemia), and by Friday night/Saturday morning, I felt as high as a kite from all of the renewed energy!

From that point until now, I've had several flares, but lived in denial. My original GI doc refused to listen when I told him I was not tolerating the Prednisone very well and kept increasing my dosage :ymad: I finally gave up after the Cimzia failed. I weaned myself off of the Prenisone and have remained med free since June 2014. I had convinced myself there was no way I had Crohn's. Can we say denial, boys and girls?

Enter March 2015. New GI, new labs, new colonoscopy, and confirmed diagnoses of Crohn's- "from Ileum to exit" is what the doc said, as well as diverticulitis, several abscesses, and (sorry, gross) anal skin tags:eek2:. My follow-up appointment is next week; he will go over pathology reports (which I have already received) and treatment plan. I know he is wanting to start me on Remicade, B12 shots, and iron infusions, but beyond that I don't know.

Can anyone inform me of what side ffects I can expect from the Remicade? The Prednisone made me gain 15 lbs in less than 10 days, I developed golf-ball sized nodules in my neck, and the mental faculties went out the window!

 

[24601]

Oh yes I recognize denial! Been there, done that. Sorry it didn't work for you either!

I'm glad you have a new GI and a new treatment plan.

When I tried Remicade I would get very tired for a day or so after the infusion but after a few infusions that effect went away for me. I didn't experience any other side effects at all. For me it was a picnic compared with pred.

Hope it works well for you!

 

[mamalana]

I had my follow up today and the doc covered my pathology results: confirmed Crohn's from ileum to "exit" with granulomas present throughout. Also said I have multiple fissures, is testing me for Celiac disease, suspects a fructose intolerance, and started me on Entocort 9mg/ day. He gave me a sample of a cream for the fissures and all I can say I is, "Ah, finally, some relief!" He is aiming to get my insurance to approve Remicade infusions, so I hope to hear something soon. Fingers crossed!

 

[DJBHeat]

Everyone reacts to Remicade differently, I personally don't have a problem with it. Like 24601 said, I mostly just got a little sleepy for a day or so, then I'm good to go

 

[24601]

I'm glad you're getting some relief from the fissures - they can be so painful!

Because you had such issues with prednisone (and I can relate to that!) I just wanted to mention Exclusive Enteral Nutrition (drinking liquid formula like Ensure or Modulen instead of normal food) as an alternative to steroids perhaps for the future if you need a course again after this round of Entocort. While EEN is less commonly used to treat a flare for adults than in children, it's just as effective and even as adults it's desirable to avoid the side effects of steroids. Anyway I'm happy to answer any questions about that option if you'd like to know more or there's lots of information in the sub forum here. It was an option I was really pleased to have at times instead of steroids.

Hope you get approval for Remicade soon and start feeling better!

 

[mamalana]

Thanks 24601- I wanted to ask my GI about that very thing as I am finding that although I am in an active flare (with zero pain?!?), when it comes time to eat, everything-even water- makes me extremely nauseated. I mentioned the nausea and that's when he said to try the Entocort. I am finding that I am eating much less than before (down from regular portions to toddler portions and many days, only one meal with maybe a very small snack). I eat and deal with the nausea because I need the fuel, but am getting to the point that it just doesn't even seem worth it. Don't get me wrong, I have an appetite but then it's like my stomach and brain have a meeting and just say, "meh."

 

[24601]

It seems like it would be worth trying for you at some point if you'd like to. I mean we all respond differently to treatments and tolerate treatments differently but EEN does help in a flare for a lot of people - plus it sounds like you would benefit from the nutrition since you're not able to eat adequately at the moment. Although of course if you're finding right now that you're getting nauseous from even drinking water, you might well not be able to drink enough formula. Hopefully the Entocort will start working and improve the nausea and other symptoms. Otherwise there might be the possibility of your doctor giving you an anti-nausea med, if there's nothng else to be done about it, so you could cope with drinking the formula or having an NG tube so that you pump slowly (which can help with nausea) - I don't know if these are options for you for sure but it still might be worth discussing.

I hope you start to feel better soon. It's very difficult coping when you are in that vicious cycle of knowing that you need to eat but it makes you feel awful and then you lack the energy to go through everything that goes with eating although you know you need the energy from food. I've definitely been there and I just want to say hang in there. Keep eating a little and often, and anything you think you can manage or find a tiny bit tempting, and hopefully the meds will kick in soon.

Definitely let your doctor know how much the nausea is affecting your ability to eat and drink. It might even be that you're dehydrated and need IV fluids.

 

[mamalana]

This one is long, but I needed to ramble.

Newest update. Had EGD done yesterday; confirmed Crohn's in the antrum and duodenum, with some "pretty bad ulcerations." He took biopsies from my espophogus (for suspected Eosinophlic Esophohagitis), duodenum (for suspected celiac sprue), and at least four more from the antrum area. He also ordered a CLO test to check for H. pylori infection.

He has placed me on Nexium, in addition to the Uceris, and I should receive word regarding the Remicade or Entyvio soon (gotta love the insurance approval process).

On top of all of this, my psoriasis is going bonkers on my scalp, and over the past couple of weeks I have become covered in what looks to be tiny spots of psoriasis- from my knees up to my shoulders- it look like chicken pox because there are so many! I have NEVER had it on my body other than lower left leg, and scalp. I feel like my body is broken and spiraling downward. I'm trying to stay positive, knowing how much worse things can get, but it is so hard maintaining this creature that has taken over me! I have begun turning inwards, away from my family because they can't fully comprehend how I feel. My hubby is amazing and supportive, but in his mind, it's all because of foods and that dietary changes should fix it. Bless him, he is slowly learning more. My kids- that's the hard part. I have three living at home, ages 19, 13, and 5. The two older ones can't understand why I'm exhausted all the time or why they need to pick up the slack when they can, and my five year old doesn't understand why I can't just jump up and go-go-go like I used to. I feel SO selfish when I have to rest or am having discomfort, I know I shouldn't, but I do. I used to be extremely active... I usually push through the lethargy and do what needs to be done, but pay for it later. I hope the meds are approved soon and that they will help, with little to no side negative effects. I, along with my family, miss the old ME!

 

[24601]

Sorry to hear that you have other areas of your GI tract affected by Crohn's. Fingers crossed the insurance approval comes through quickly so that you can get started on meds soon.

Did your doctor explain his thoughts on Remicade versus Entyvio? Remicade is faster acting so I'd have thought that might be a good choice but perhaps there are other considerations for you.

It's certainly hard dealing with Crohn's (and the other issues that can go along with it like psoriasis) and I think it's not easy for those around us to understand. But right now you do have to look after yourself and get more rest than normal - and hopefully everyone will come to understand that it's important for your health and/or you'll be on new meds and feeling better soon. Hang in there and go easy on yourself...you're not doing this for fun and you want to be back to your old self as much as your family want you to...which will hopefully be soon!

 

[mamalana]

24601, no, doc never mentioned it. I know he's really wanting the Remicade though- the only reason I saw the form for the Entyvio was because I was snooping through my charts while waiting to go back for EGD, lol! I saw the form behind the Remicade/Remistart forms so I guess it's a backup plan.

I'm having to make so many adjustments all at once; I know it'll take time. Being told your fave foods are hurting you is like being told your best friend or lover has never cared for you!