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Crohn's Disease
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Posted 1/8/2018 12:26 AM (GMT 0)
Hello my name is Susan,

A little background...in September 2017 I had a wicked sinus infection that required antibiotics. The first round of antibiotics did not work so my doctor prescribed a second round. This is where my health went off the rails. Three days later I went to the ER because of chronic diarrhea and I was afraid that I may have C-Diff. Well when I told the doctor my concerns he asked if I had been on the computer "googling" my symptoms. I told him that I had and he told me no need to worry, everyone gets a little "diarrhea" when taking antibiotics. I was hydrated and sent home with (2) prescriptions. Two days later my fever was 103 and I was admitted to the hospital with a positive C-Diff diagnosis with colitis. I was started on vancomycin and treated for my symptoms over the next (3) days. On the (4th) day I woke up pregnant or should I say I looked pregnant and I had gained 15 pounds. The doctors said that they may need to take my colon due to the C-Diff but we were not there yet. Along with the constant diarrhea, I started to have breathing problems due to the swelling in my stomach and my heart rate and enzymes went bonkers. On the (5th) day....everything went nuts. All I remember is being transferred to ICU and being told that I was going to be sent by life flight to University of Alabama Birmingham, UAB, for surgery. I woke up in ICU at UAB hospital with a new team of doctors and a new treatment plan. For the next (4) days I was given vancomycin enemas and other medications to try and save my colon. On the 5th day the team decided to do a fecal transplant and within 24 hours I was feeling better but I still had chronic diarrhea and pneumonia in both lungs. They said that this would go away along with the swelling in my stomach once the inflammation went away. I was not eating and had gained another 15 pounds. My stomach was huge but they discharged me to go home.

I was home for 2 days before I needed to go back to the hospital for dehydration and pain. I was admitted and they performed a paracentesis and took 2 liters of fluid. I was in the hospital for 3 weeks and scheduled to go home when they decided to do a colonoscopy which is when they realized that they were dealing with two separate problems and was diagnosed with Crohn's Disease. I was severely malnourished (I lost 25lbs in 2 weeks) at this point and was started on prednisone and TPN. A week later I was discharged and scheduled for my first infusion for Entyvio.

I am still on prednisone and I will have my 3rd infusion in March. I still have multiple BM's but they have decreased to between 5-8 per day. I have started back to work part-time but I am still so tired. I am new to this disease though I have had intestinal issues all my life. Has anyone experienced hair loss with this disease? My hair has stopped growing. Also, how many of you work full-time? I've already had to miss a day of work because my body would not cooperate! I'm a paralegal and my boss has been very understanding through my illness. Any advice or tips would be appreciated and helpful!

Thanks!
Posted 1/8/2018 12:49 AM (GMT 0)
Hi Susan,

I don't have Chrons but I have been suffering from anal fistula issues for the past year and this board seems to be the best place to get information on my condition. First of all I want to express my greatest sympathy to you. It sounds like you've been through hell & back! I am sure there's people who are more versed in Chrons who can answer your questions but from the reading I've done on here it seems that Chrons, with the right treatments and management, can become very manageable. As I've done with my fistula I would look at your eventual diagnosis as the beginning of your journey to a more positive place. Prior to diagnosing, as was the case with my fistula, doctors and surgeons seem to just throw different treatments around in the hope they will work (and to be fair on them, they probably do work often). However, now that your condition is known it will make it easier to go forward. It's very important that you find a specialist that you trust and who knows their stuff. In my experience most specialists are good but some are much better than others, if that makes sense.

Chrons is such a difficult illness because it can feel consuming and it's not exactly dinner party conversation. A lot of people on this board seem like they are isolated so it's really cool you have come forward to tell your story. There's others out here who are going through similar experiences!

Good luck and stay strong!
Posted 1/8/2018 1:15 AM (GMT 0)
Welcome to HW Susan,

You've been on quite a ride!!! I hope they've got the C-diff under control first of all. At least then they can focus on your treatment for your updated diagnosis of Crohn's.

I'm glad to hear that you've been started on an anti-TNF, (Entyvio). I would have opted for Remicade first though, and am surprised that they didn't put you on it. Entyvio may work well as you wean off of Prednisone, but from my understanding, Entyvio can take a little longer than some other anti-TNF's to take hold. Remicade on the other hand, is well known for working extremely quickly for most.

It sounds like you're getting good care, but it might take time to get things to where they should be. You really need to stay on top of your symptoms. If you feel like things just aren't right, then get to your GI asap. Best of luck to you going forward. Keep us posted on your progress.
Posted 1/8/2018 12:20 PM (GMT 0)
Hi Susan & welcome to the forum. Wow, I am with 73monte, you have been on some wild ride. I had that crazy roller coaster ride back in 02 when I was dx'd. Hang in there, with the right treatment things will get better, it takes time.

I am surprised too that the dr didn't go to Remicade. Regardless, I suggest you keep a little notebook & keep track of how you are doing & above all never hesitate to contact your dr. As for the hair situation, once you get healthy again your hair will go back to normal. You were extremely unhealthy & it does affect our hair & it will take some time.

I have not been on Entyvio so I have no real knowledge of it. What I do question is why you cannot have an infusion until March. Perhaps one of the other members here that is on it can address the time schedule for infusions. You can go to Entyvio.com & they have a patient assistance program that will help with your co-pays. It works with your private insurance too. If you have a high co-pay I urge you to check it out.

Now that you know you have crohns I urge you to educate yourself about it. Check out CCF.org. This is a very reputable website for IBD's & the information is accurate. The web is a wonderful tool to learn about things, however, there is a lot of inaccurate garbage out there too. Come here & ask questions or to vent. Some of the medications we use to treat this disease can be scary. Just remember, every medication on the market has potential side effects. They are required by the FDA to list these potential side effects, it does not mean it will necessarily happen to us. Again, it comes down to educating yourself. When I joined HW I think in 04, I learned so much from the members here. My gi even recommended reading at CCF.org. We see a lot of people new to the anti-TNF meds & their fear is so great they have anxiety & stress through the roof. They panic if they get a sniffle & immediately think oh it's the drug. In all honesty, yes, these meds can potentially compromise the immune system, but while I was on Remicade & Humira, I was healthy. I think the reason I was healthy is because the medication was doing it's job. I actually had fewer colds & fewer upper respiratory infections. We don't need additional stress dealing with this disease.

Yes, people do work full time jobs with this disease. We have lots of members here that work. Right now things seem pretty gloom for you because you were so sick. When you get in the shape you were in, it takes time to bounce back. Getting your symptoms & disease under control is a key to feeling better. Eating healthy as you can & getting plenty of rest is a must, don't tax yourself, you took a pretty good hit in the health department.

Take care.
Posted 1/8/2018 5:04 PM (GMT 0)
Hello FLgirl66,
Just wanted to recommend the Crohn’s and Colitis Foundation website for you to find much info on Crohn’s disease and resources to help steer your medical decisions. I’ve had Crohn’s since 1990 and find their website useful. I’m also a pharmacist and can help answer questions. Additionally, We treat many patients for C-Diff at the hospital where I work with success. We sometimes have patients repeat a “pulse” 10 day treatment of oral vancomycin and Flagyl outpatient to make sure the C-Diff doesn’t come back.
Hope this information helps you and or others.
Posted 1/12/2018 10:25 PM (GMT 0)
Thank you everyone for your comments. My GI went back and forth between Remicade and Entyvio but decided to start me on Entyvio because he said that it had fewer side effects and felt that it was a better fit for my treatment at the time.

@straydog - I am still on the loading phase for Entyvio. I believe the 3rd infusion is (10) weeks after the 2nd which puts me at the end of February/early March.

@73Monte - I had a fecal transplant and that took care of the C-Diff.

I'm trying to take my recovery one day at a time and trying not to be impatient or put unnecessary demands on my body as it tries to heal. Thanks again for your comments and advice.

Susan
Posted 1/15/2018 2:34 PM (GMT 0)
Welcome FLgirl66!
I don't have Crohn's but my son (21) does and he was dx right before his freshman year of college. He too went on a "wild ride" and his included C diff (along with obstruction and surgery). As his mom I have diligently sought out information on Crohn's so I can be a better advocate and support person to him. This forum and the Crohn's and Colitis Foundation has a wealth of information for you. Between these two options I have learned a lot about the disease and ongoing treatment options. The Crohn's and Colitis foundation also offers online chats / webinars and a lot of updated information for patients and their families. You have come to the right place! Best to you!
Posted 1/16/2018 12:05 AM (GMT 0)
@Betty Sue - Thank you for your reply and support. It is not natural for me to ask for help but this has threw me for a loop and this forum has a wealth of information. I have visited the Crohn's and Colitis website several times and I have found it to be very helpful but sometimes it is better to hear from people who are experiencing it. I hope your son is doing well.

Susan
Posted 1/16/2018 12:26 AM (GMT 0)
It is SOO VALUABLE To hear from people who are living it. SO many times I was desperate for answers or ideas and have always found support and compassion (and great insight) here! And thanks for asking about my son - he is in remission and has been for almost ONE YEAR smile!!! Even wild rides can become slow roads with enough time and treatment! Keep us posted!
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