I will add my first surgery was open as there were not quite sure what they would find. The second started as laparoscopic but moved to open and so the surgeon now says open from here on out. Also,...
Nothing has changed, crohn’s just doings thing. Surgery is scheduled for Dec 10th. That is the first available date for the surgeon and the hospital. I am on wait list for s A week earlier if...
I also have latent TB...
I had my third shot, not the booster, back in August. Taking Stelara qualified me according to my primary care doctor....
Thanks Clo. I am asking about remicade restart as well. I have not been on it for over 10yrs. Good luck with you Medicare sign up. It is all driven by your zip code. I am having to change my part d...
Thanks everyone. My wife is a saint for all she does for me. Not only the crohn’s and these surgeries but I had a brain tumor removed and open heart surgery. We just had our 35 anniversary. NCOT, the...
Well, I have been told by both my GI and a colon rectal surgeon that I need a third resection surgery. My last one was in 2017. While it’s not blocked, my crohn’s has inflamed at the last resection...
I have gotten the first two merderna shots back in feb/mar with no issues. Got the third merderna first day it was approved. All went well....
Hey there. I haven’t posted in a while. I am also on Stelara, taking it every 8 weeks. I still have inflammation and diarrhea and such. GI checked my levels, and it showed my system metabolizes the...
Hey there. I occasionally lurk and read but haven’t posted in a long time. Sterilants is not really working anymore. Will be scanned again in 60 to 90 days and determine if I need a third surgery. I...
I want to add that a GI who sends a patient to a facility to have them do the injection, is strung that the patient cannot do the injection themselves. Thus why my GI said absolutely not. Also, I...
Hi, I am on Medicare and take Stelara injections. But I did purchase a separate Medicare drug plan. Are you on such a plan? If you are maybe that plan doesn’t have it in their formulary. That drug...
Yes , I have all the Medicare. For Stelara you need a drug plan which is part d. There is no maximum out of pocket so you keep paying a portion with each fill of the RX. The issue is Medicare doesn’t...
I too retired and went on SSDI at age 56 I gave up the fight. I was also approved first time with no appeal or judge or such. I guess that says how bad I am. I am lucky in that my employer had long...
I have it as well and see a rheumatologist. Unfortunately he cannot prescribe meds for me due to drug interactions. He did suggest therapy mittens that you place in microwave to heat up and then wear...
Randy, hang in there. I too have been lurking around the site but not posted in a long time. Like you way too many health issues. In fact I am in hosrigjt now with a bad flare. Hope to be released...
Great to hear! I hope it helps this time around...
I don’t mind at all. This site has been a wonder support to be so I am fine with sharing. I am on company paid long term disability at the moment. I am Working on social security disability as I am...
I am a 57 yr old male and have had two resection surgeries, so I have lost about 3 feet of small intestines and of course the valve at the TI. My GI said some of this is from the surgeries and some...
Thanks for posting the link. I read the whole posting. Very interesting discussion. Seems to be a lot of well read members on that site. My gi has told me that the research is slowly switching to...
Thanks to all. I am trying out a few different ones to see which one i like best. Thankfully, they have saved me once in the past week. So i think this is the way to go for now until i can get it...
I am so frustrated with accidents at night while sleeping. Sometimes just a small shart, others like last night a bm and I didn’t wake up until afterward. I am now taking welchol many times all day...
So happy for you,NCOT! I hope stelara is the answer....
There are other options. Questran didn’t work for me. My GI switched me to welchol and it is working much better. I still have occasional breakthroughs, but I manage. It did take about 3 to 4 days to...
I have both afib and crohn’s. I was on warfin for years then went on eliquis. Unfortunately I had a major gi bleed out and lost 7 pints of blood. I am now not on blood thinners. But I have had a cox...
Hummmm. I don’t have dandruff never had. But I have horrible crohn’s...
Minniety, Sorry you are not being supported at work. I suggest you get a letter from your GI that states your needs from time to time that work needs to make reasonable accommodations for. I am not...
Hi jdiane. I took warfin for years along with having crohn’s. The newer anticoagulants were not available. I didnt have any issues for many years, but that changed once the Crohns became very active....
Hey ncot, glad things went well. Here in the states having someone drive you home or be with you at all times from scope through discharge has been standard practice for years. At least for all my 19...
Not to rain on anyone’s CBD oil parade, just a level set. We need to all be cautious for two reasons at a min: 1) there has been zero research on how to grow and the effects on the human body. The...
I started with colestipol, then moved to welchol. These are both pill form. The welchol is working much better. As Habs points out my GI wrote the Rx to allow me to adjust the number of pills as my...
Hey NCOT, great to hear from you. Congrats on the windfall! Every little bit helps. I am on stelara and it has helped my symptoms hope it provides you some help as well. Unfortunately my inflammation...
I am on stelara, but my weight swings up and down, depending on how my system is doing. Right now I am on a 10lb + loss. Not good. But there are t8mes I just don’t feel much like eating and when I do...
Thanks for posting. But this seems to be a yr old information as they mention starting a follow on trial in 1st qt of 2018. Maybe I missed something...
Juliet, I suggest trying mayo or Cleveland clinic. I went to Mayo on advice of my GI. He referred me and it did take 2 months for the appointments, but it was determined i needed surgery and that was...
I plan on asking my GI about this when i see him next month. I will let everyone know what I hear for those of us in the USA...
Thanks. For the latent TB I am starting Isoniazid (INH)* and Rifapentine (RPT) for 3 months. The benefits outweighs the risks with interactions. Also along with Vit d, zinc they added b-12. Looks...
So latest blood work and stool sample. Iron saturation is down to 11 from 16 in July. Vit d and zinc are very low, dr just wants to do suPplements. No iron infusions until it dips below 10. Fecal cal...
From what I have heard it can. Should discuss with your dr. I didn’t have that issue, but lots of others.lol...
I should hear today on which treatment plan. I must have come in contact with someone who has active TB in the last year as I look at lasted years results with the same quanton Freon test which was...
Well, I wasn’t expecting this. During my round of blood work the GI said it was time to do my annual TB test, mind you I have ever tested positive in my 15 yrs of being on the biologics. Well, i...
It took about 12 yrs before my first resection and then another 7 before my second. Some of changing data is the new biological and how they are helping many...
I have sever anxiety and panic attacks. My doctor just moved me from Xanax X-ray to lexapro, as Xanax is for more short term issues. He also gave me clonopin tabs to put under my tongue when having a...
I am fine with the new layout, but understand Change is hard. I personally have eased off posting only because there is not much change in my condition. I did post a few weeks ago about a new...
NCOT, you made me laugh! Thanks I really needed a chuckle today. All the best to you...
So got my test results back from the Dr. she said it clearly demonstrates that i have slowed cognitive processing speed. Non-amnesties means it is not related to dementia or Alzheimer’s. She said...
We probably don’t say it enough, so here goes. Thank you to our forum moderators, the forum and all of the members who support each other. I personally know that this forum has been a godsend to me....
Hi Susie. I really do appreciate the guidance. It is extremely helpful. It seems there has been some misunderstanding as crohn’s is being listed as reason for disability. I assume the anxiety...
I just had a quick call with the attorney. He said the most important items are treatment letters from the GI and any other physician. I have the letter from the GI and am faxing it to him, although...
I have started the process. I am out of work for crohn’s and anxiety disorder. It is listed on the approval from Liberty Mutual. I re looked at what i have submitted and signed so far, and at this...