Not the best start to my new year

[sweetmamanik]

Hello all, I'm new here and thought I'd give socializing a try. I'm a pretty shy and private person IRL and aside from my career and my kids I don't really interact much with anyone...other than doctors and nurses anyway.

For some background, I've been a very healthy person all my life. Very strong immune system and rarely ever sick. Never had been hospitalized for anything other than when I gave birth to my children. Hesitant to take a Tylenol. About 9 years ago I started noticing blood in my stools. I blew it off for a while and chalked it up to probable hemorrhoids or something equally benign, but the hypochondriac in me couldn't let it go. I finally broke down and told my GP and she ordered me to get a colonoscopy. I was 25 at the time and had just lost my dad to pancreatic cancer, so when they called on a Friday afternoon and left a message that they needed to speak to me I immediately started thinking the worst. Finally on Monday morning I was able to get a hold of someone who informed me they found ileitis. I was referred to a GI, however I was having no other symptoms. No pain, no weird bowel habits, nothing. I had crappy insurance and wasn't keen on the idea of taking what I viewed as "unnecessary" medications so I just let it go as something minor.

Fast forward about 6 years; a college degree, successful career, an engagement and the birth of my 4th child later, and the stomach pain began. It was never severe, but always constant. Every day, most of the day, my stomach would hurt. The blood was always coming and going but it got much more constant around this time. Then in October of 2014 after a great night with my fiance, a dine in movie and "desert" if you know what I mean I end up in a fetal position in the bed. My stomach was KILLING me. Like I was being stabbed in the stomach repeatedly. It lasted a couple hours before it finally died down enough for me to fall asleep from exhaustion. 2 more of these "episodes" in the coming months and the 3rd landed me in the ER on New Year's Eve. I was admitted to the hospital with a small bowel obstruction and at that time was told I likely had Crohn's. I was referred to my GI and after every test you could think of...another colonoscopy with biopsy, an upper GI and small bowel series, MRE with contrast, and tons of bloodwork I was officially diagnosed with Crohn's.

Throughout 2015 I had 11 flares, 8 required at least a hospital ER visit, 5 were determined to be partial small bowel obstructions, 2 landed me admitted in the hospital for a few days for partial obstruction and 1 total obstruction had me in the hospital a week over Easter with an NG tube and the works. After trying all kinds of med combinations my GI scoped me a 3rd time and determined that a portion of my small intestine (in the jejunum) was scarred/stricture and would never be able to be reversed. She referred me to a surgeon and my small bowel resection was scheduled for October. I was in the hospital 5 days and home from work for a week. 10 days post resection I had another partial obstruction which landed me an overnight stay in the hospital. At this point I am at my wits end thinking is nothing going to help? Is it hopeless? I'm on Remicade every 8wks since April, Azathioprine and Sulfasalzine. Had steroids intermittently and tried mercaptopurine and allopurinol as well without success.

Finally closing out 2015 it seemed like I was on the road to recovery. After the post-surgical blip I had gone just over 2 months without a flare which had been the longest amount of time in the last year. But lo and behold yesterday at work my stomach started gurgling. Making lots of sounds and progressively hurting throughout the day. I knew what was coming, that's always how it happens. It just progresses until I can't take the pain anymore, so I got to ring in 2016 the exact same way I got to ring in 2015, in the hospital. They did x-rays and thankfully said they didn't see an obstruction but still, it's like I can't catch a break.

I feel like my life will never be normal again. I will always have to worry that I'm going to flare. What if I'm at a work conference, or school, or somewhere alone with my kids? I blew through all my vacation time by September 2015 and had to take unpaid time for my surgery and other issues. I can't afford that. What if I have another complete obstruction and I have a perforation or some other life threatening issue? I'm just so discouraged right now. I'm doing everything I'm supposed to do but it's not working. We've been wanting to have one more child but all my health issues have forced us to push it off. This disease has changed the course of my whole life. I had plans...I'm getting my Master's, I have so many career aspirations, and I wanted another child, but now it's like I can't make plans because I don't know what the future holds for me.

OH my gosh, I'm so sorry this is so long I've just been holding all this in for so long. No one really understands what I'm going through so I thank you for listening if you made it this far. I'm trying not to get depressed but it's hard. I just want my life back.

Nikki

 

[ronroush7]

Everyone is here for you. Have you asked about seeing a specialist? Maybe they don't have the right mixture of medicines. By the way, welcome to the group. Stay encouraged. Let us know how you are doing.

 

[Clash]

Welcome to the forum. Im so sorry for all you have had to go theough.

Were you placed on Remicade after the surgery? If so, how long have you been on remicade? Have they not adjusted your dose or schedule? Or ran an antibodies and trough level test? There are a large number of people that end up on a schedule shorter than 8 weeks because they cant make it the full 8 weeks.

I do understand the struggle and frustration of future plans and goals. My son was dxed at 15 and was on Remicade for two years. Although the remicade did provide symptom relief it was unable to quell the incessant inflammation and he required surgery at 17. After the surgery he started back on Remicade after two infusions he had built up antibodies to remicade and had to switch to humira. Three months after starting humira a scope showed microscopic inflammation at the anastomosis site. Six months later another scope showed visible inflammation from ileum down through entire colon and rectum. It is soul crushing to find out the meds aren't controlling his disease (he's been on methotrexate injections almost the entire time too.) He is asymptomatic which is a blessing and a curse because he is moving forward in life but we don't know how the disease is progressing without scopes (blood work isn't an indicator for him unless he has anemia and fecal calprotectin was a good indicator but has recently not been as accurate). I worry about what med will finally work, how is this going to affect college, work family etc.

There are many compassionate caring people on here that are great at listening and offering their experiences. I truly hope you are soon able to reach remission and then long may it continue! Hugs!

 

[Lady Organic]

Hi Nikki and welcome.
Crohn's has already changed my life in many ways too. many things I can no longer do or plan. Adaptation and coping can take time and is a remake at every episode or new symptom. Its a ongoing challenge. Not long ago, I came out really strong after a bad episode. During that episode (arthritis onset) I felt so much anxious and at loss and though I'd be miserable forever. Things eventually changed and I got a better insight and view on things now. Even if I am limited compared to my peers, I still ended being a happy person. wishing you well.

 

[sweetmamanik]

Thanks for the welcome

I started oral meds in January. The mercaptopurine (6-MP) wasn't effective according to the bloodwork, so I was switched to azathioprine. My GI doc wanted me to couple that with Allopurinol, but the Allopurinol made me sick to my stomach and I wasn't able to take it as directed. I was also taking sulfasalazine. These meds did seem to help the daily mild pain I was experiencing, but they didn't stop the flares. We had to do all of this crap first because my "insurance" which was state Medicaid wouldn't approve any biologic therapy until everything else had failed. Finally when I had a total obstruction in April (I was literally vomiting feces) and was hospitalized for a week they gave me my first Remicade infusion in the hospital. I continued having flares so I was referred to a surgeon and opted for the small bowel resection and had that done in October. I continued taking the oral meds but stopped the Remicade and started back a couple weeks after surgery. Things had been going well, over 2 mos without a flare but then bam.

It is discouraging, feeling like nothing's going to work. I've gotten over the medication issue, I'll take whatever it is I have to take if I can just have my life back. I've spent so much time in the last year sick or in the hospital I feel like I barely did anything with my kids.

I'm curious what other people call "flares" and how you define "remission". My disease seems pretty atypical so I'm just wondering what it's like for others.

Thanks again!
Nikki

 

[Clash]

I was asking about the remicade because if you had a long break between doses of remicade your body can build up antibodies to the drug making it ineffective for you.

My son was on Remicade until surgery. He had to come off for surgery and when he started back his body built up antibodies to it so it was ineffective and not able to keep active disease at bay.

Some people flare with symptoms meaning they have active inflammation and have symptoms such at pain, D or C, fevers, fatigue, mouth ulcers etc (one or any combo of their active disease symptoms) other have active inflammation but are asymptomatic or don't have outward signs of the inflammation going on inside. That's why regular testing is required.

There are different stages of remission. For a long times GI wanted to get their patients in clinical remission which is absence of symptoms and decent labwork. But now GIS have found that deep, stable remission with mucosal healing leads to longer periods of remission and less permanent damage leading to surgery.

Deep stable remission includes clinical remission, endoscopic remission (visually clean during scopes) and histological remission (no inflammation at the cellular level when biopsied) this leads to mucosal healing in the bowel.

You may want to request an antibodies test for remicade to determine if you've built up antibodies. Another immunosuppressive you can take along with remicade is methotrexate.

 

[ronroush7]

Flares for me would include going to the bathroom numerous times, feeling nauseous and bleeding.

 

[ronroush7]

remission is harder to define. They say that is where I am right now but in the last couple of months I have experienced cramping and abdominal stinging and occasional fecal incontinence.

 

[RickS]

Sad as I read all these posts how we (Crohns sufferers) are all a bunch of Guinea pigs. treatment regimes do not seem to be very routine and sounds like it is a crap shoot.
I ate 1000's of pentasa over the years. i can say they basically do little for me at least. Certainly do not prevent fistulas or obstructions in my case.
Imuran gave me a major gut ache after a few weeks on it. mtx seems to be working for me now, except for the nausea felling all the time.
So I guess you have to try the gamut of drugs out there to see what if any does the best for you.

Rick

 

[Clash]

RickS, are you taking folic acid daily? It can help with the side effects with mtx. Also, the oral mtx causes more symptoms for most people over the mtx injections. My son has been on both and is still on mtx injections, he's had no side effects with either. Lastly sometimes the GI will px zofran to take 20 or 30 mins before mtx which can help with the nausea as well.

As far pentasa, it's pxed off label for CD. It works for UC because it treats the top layer of the intestine which is what UC affects whereas CD is transmural, affects all layers. A Cochrane Review of many studies with pentasa showed it was as effective as placebo. Still, it can help with mild disease for some and can be a decent adjust med. Some GIs like to start with the med with the least risk but unfortunately the least chance of effectiveness. It just depends if the GI is using the bottom up model of therapy or Top down approach.

 

[RickS]

Hi Clash,

You offer up lots of advise for us suffers. Thx for that. I do want to get my experience out, as I am reading many suffers are not well educated in their disease. Basically struggling to control it. They should be involved and educated because CD is a funny one, it has many forms and affects different areas, comes and goes, painful, life changing etc. Thus treatment for one may not work the same as others. It really comes down to some trial and error on the meds.
If you can get pentasa(5-ASA) to do the job, great, it seems to have very little side effects. I did take it for many years but it would not stop me from getting a fistula into my bladder(surgery) or the pains, sickness and diarrhea.
I wish I had used/tried Cholestyramine when i was on Pentasa to see if it would have helped with the diarrhea and the feeling of not being able to hold it back(urgency issue). I do not like loperamide (Imodium) as even a small amounts(1/2 a tab) shuts down my intestine for days = peristalsis action is dumbed out it seems. Just like an opiate should do

Okay to answer your ? on folic acid supp
I was directed by my GI to take a 5mg pill of folic acid two days after my injection. I take a B12 supplement too as my count goes down if I do not take B12 daily. I also get a small dose of folic acid in a daily muti-vitamin.
FYI, B12 is absorbed in the ileum, if it is diseased or you have some/all of it removed, you will have B12 absortion issues. I am lucky I have enough left that all I needs is a vitamin supp and do not require injections of B12. Maybe they should add B12 too the mtx for me
Of late it I am having a mouth ulcers, seems to be one at a time but it moves around, today i have one on the inside of my lip. Not painful, but they are their, none the less. Seem to heal in a day or two, but as one heals another forms. Not really been a problem however. I got them too when I was on pentasa.
I can say my current meds, 6/10cc injection of mtx once a week and one pack of oleystr-lite powder with OJ at lunch time has my CD and diarrhea under control, now for about a year now. Apart from the mtx side-effects I am stable. Lets hope it stays that way.
I take the mtx on sunday night, I feel okay on monday, if I have lots of food in my belly. tues/wed are the worst for the nausea, it is constant, gets worse with an empty stomach. I eat everything now, amazing really considering b4 mtx I was on the watch for everything I ate, as you(I) always have it in the back of your head it is something I am doing wrong. I can even nuts now, which in the past gave me problems with digestion.
Tobacco smoke is a killer for me. They should research that more as it turns my guts = evil to me. 420 helps me out too with the mtx nausea as I vap daily, it is savior for me.
The abdominal pain, that I always had in the ileum area seems to be gone, with mtx, less or no sensitivity and no more throbbing, night sweats.
Still get lots of joint pain, esp the worn out knees for some reason
I am lucky, I guess in the CD suffers world, as I have a mild form, so I do not have to beat it down as much as others have to, it seems from what I am reading. Having CD take effect early in life seems to be more severe and debilitating, a real shame. Bad enough getting it in mid life, but to suffer your whole life eek.

I do have one ?, wondering how low a dose I can go on mtx? I started at 1ml(cc), now on 6/10ml, going to ask the GI in Feb, if i can reduce it further to say 1/2ml or less. Might help with the constant nausea and occasional mouth ulcers!

Rick

 

[sweetmamanik]

Clash - to answer your question I am actually getting another antibody test this month. I get blood work every 8 weeks before my infusion. The infusion I was supposed to get yesterday but guess what, my new insurance is still "pre-certifying" so I had to cancel. I loathe insurance companies, there's no way any insurance company should have more control over my health plan than my own doctor!

Methotrexate isn't an option for me because there is the possibility of my becoming pregnant. My GI won't even consider prescribing it for a woman unless she's either unable to have kids or certain she wants no more. I did have to take it once though about 7 years ago when I had an ectopic pregnancy and boy did it make me sick. I think it was a really high dose though.

How long do "flares" usually last for people? Mine are usually hours (maybe a few days depending on the severity) so I have a hard time determining when I'm in remission. Is it any time I'm absent of symptoms? Or do I have to go a certain amount of time without a flare? I'm confused about that.

 

[Clash]

It depends on the remission you are talking about.

GI used to aim for clinical remission which is absence of symtoms and decent labs. Now GIs have found that deep stable remission which includes clinical, endoscopic (visually clear) and histological(clear at the cellular level) with mucosal healing leads to longer periods of remission whigh of course gives you less risk of permanent damage that could lead to obstructions or surgery.

So, if you are having symptoms sporadically through out the week then you are probably dealing with active inflammation and haven't reached remission. Though these is a possibility the symptoms are being caused by scar tissue causing narrowing. Since meds can take care of scar tissue other options may need to be considered.