Good luck!!...
Connor—thanks for that info. I was only tested for c diff. I’ll definitely ask my doc about the other bacteria you mentioned. I see you have MAP. I’m assuming some of the meds listed are antibiotics....
Miracles—prescription is for 10 days. I’m seeing my doc on the 10th day to discuss treatment options, so continued Vancomycin will be my first option addressed. I researched last night and found info...
FG—glad to hear Entyvio is working for you! Here is a link to the study: http://trials.crohnscolitisfoundation.org/trials/NCT03029143. I guess my biggest concern is what happens if I fail Entyvio? Is...
Had a colonoscopy on Dec. 19. Despite being on huge weekly dose of Humira and MTX, doc found significant inflammation in the lower 35 cm. He feared I had an infection, so I was prescribed Vancomycin...
I watched a documentary on called "The Science of Fasting" on Amazon, and talks about long-term fasting as a treatment for many illnesses. It piqued my curiosity as some of the people in the...
I’ve been wondering about this myself. Following this thread for your updates and the comments of others. I hope you continue to improve!...
TroubledTruds: TRYING to use them morning and night. I say trying because after several consecutive days of use, my symptoms increase. Bleeding, urgency, gas, diarrhea-and therefore accidents-all...
I’m not underweight. I’m 5’6” and 165 lbs. It’s one of the most frustrating things about my current situation because I’ve actually gained weight in the last few months. Not frustrating because I...
Despite being on a ton of meds (see sig), I’m still flaring somewhat. On top of that, I have a sneaking suspicion that I’ve developed an allergy or resistance to Rowasa and Canasa. Im having a...
I’ve had bouts of major hair loss as well, since diagnosis, both before and after starting Humira. I believe mine has more to do with the severity of the flare and general depletion of my body. I’m...
New doc changed up my meds at the end of May in an effort to finally nip this looonnnggg flare in the bud (see sig below). After 8 weeks on weekly Humira and MTX, blood work showed no antibodies but...
I had to do the same thing just a few weeks ago. There was a line of women waiting for the restroom, and the men's room was vacant. When I came out, another woman who had been waiting walked into the...
I'm on Humira and have had brief appearance of cold/sinus type symptoms appear in the days after my injection. But I can't say it was anything more than a scratchy throat, drippy nose, and minor...
Thanks for the feedback, iPoop. Bleeding is less today, gas is increased, and stool is soft formed, but I'm soooo exhausted. I've been fortunate not to have pain or spasms, however that luck seems to...
iPoop--Remicade and Entyvio were both offered as treatment options (by my previous GI) before I started Humira in 12/2015. I chose Humira out of the 3 since I could administer at home. My current GI...
I feel ya! I think most of us have had that thought at some point or another. I'm sure you've tried everything to get comfortable and/or avoid having to get up repeatedly! I hope you find some relief...
I've been on pred 4 times in the last 3 years. I had the same experience as you (except for the last time), with the added bonus of hair loss on my head, and hair growth on my face. Being female, you...
It sucks when people are that ignorant and insensitive. I've taken both approaches to handling it, but I lean more to sarcasm/humor. I'm pretty open about my disease, mostly because I live in a small...
I'm really trying not to get discouraged, but I'm at a loss. I've been on MTX and Humira together for almost 6 weeks. I take 15mg of MTX every Saturday night and Humira on Sunday night. My Humira...
No, in BR. Huge practice, over 20 docs and NPs, all GI's. Keep us posted on Stelara!...
Glad you're moving forward to Stelara. Hopefully it will help you get to remission! Out of curiosity, is the IBD specialist in NOLA?...
I use the pen as well and just went to weekly dosing. I always inject in the stomach because the thighs hurt like the devil! I follow the clockwise method (12 sites), and I find above the belly...
Tried several, but I kept Round Health. It's on the App Store for free. Very simple and clean interface. I like the reminders, but you can turn them off. Can even email your doc your history,...
Thanks for the update on your condition, and thanks for everyone who has responded. This is such a lonely disease, and it greatly improves my outlook to know that I'm really not "alone." My current...
I echo what quincy said. I recently had a similar experience with Colocort enemas and was so discouraged. My current flare is so different than previous experiences, and it's easy to get frustrated...
Carbs and junk food. But nothing fried. I know it might sound strange, but I guess I tolerate it well since there's very little fiber in more junky stuff. Bread, pasta, and the like. I can also do...
I wasn't too optimistic at first, but symptoms have improved since Friday. Saw my GI yesterday to draw labs for Humira antibody and trough levels. Hoping for good results as I haven't had negative...
Well said!...
Oh Plucky, I read your story last night and I haven't stopped thinking about you since! You poor thing! I too am in LA and have struggled with having to drive long distances for a good GI. I've been...
I promptly changed docs when the first GI I saw 3 years ago refused to prescribe rectal meds. The next doc gave them to me immediately and I felt 200% better after using them for a few days. I also...
I have a weak stomach in general, and it did make me nauseated. That's why I started earlier so I could drink a little more slowly. You could also consider starting the clear liquid diet a little...
I've had the same issue, although I think it was due more to long term anemia and malnutrition. I did all the things you mentioned in your post, plus started using a hair loss shampoo and conditioner...
Andrina: My disease is below 30 cm with majority of ulceration below 15 cm. In the past, Rowasa was the trick to get bleeding under control relatively quickly, but that hasn't been the case this...
I've done it, and I thought I would float into oblivion drinking all of that liquid. I actually only got about 3/4 of it down. I started drinking it several hours before the recommended time and I...
I had lots of nausea leading up to my UC diagnosis in 2014, but now it's more occasional. It usually comes over me in a wave and doesn't hang around long. No rhyme or reason that I can ascertain, but...
TP, I've noticed the same thing! Healthy foods wreak havoc on me during a flare, but most junk is no problem. Go figure...
Although improving, I'm still in a flare 😡. Doc added Colocort enema at night a week ago today. BUT, almost every time I use it there is more blood! I was really hopeful not to see blood this...
Yes, Lialda was my daily med. We discussed 6mp, and he felt the mtx would be faster-acting. My prior pred tapers left me blood-free by the end of them. Everything about this taper was different. I...
Saw a new doc last week, and I agreed to start methotrexate. He also increased my Humira dose to weekly and took me off of Lialda. I also finished my pred taper today. I took the first dose of mtx...
Thanks for the feedback! On my way to the doc today, so we'll see where I go from here!...
I haven't, only mesalamine. I'm seeing a new doc tomorrow, so I will definitely ask about them. I managed to stay in bed continuously last night from 9:30 pm until 5:45 am by staying on my back, so I...
Flowers, I hope you get some relief!...
Currently tapering pred, down to 20 mg. Days are great! No BM's or gas AT ALL. Around 8 pm, I'll start the nightly trips to the bathroom. I'll go 3-5 times between 8 pm and 8 am, with the majority of...
I've had this issue recently while in a bad flare. Usually I just see flakes of the outer coating. My GI said this is common while flaring, however it's discouraging to see thousands of dollars in...
notsosicklygirl: I recently had stool test for c diff, which was negative. I also had stool tests in March for c diff (negative), lactoferrin and fecal fat counts, and of course lactoferrin was high....
FlowersGal, how are you doing currently? I see from your sig you've been flaring for over a year--I'm nearing that milestone myself :(...
These are extremely helpful questions! Thank you! I feel so much better having an idea of what to ask the doc. BTW, the biologics nurse has suggested I see a different GI in the same practice as he...
iPoop, I was hoping to find support in a clinical setting. Thanks for the link!...
Thanks TT. I'm not familiar with it, so I will definitely research. Do you have experience with LDN?...