Maybe I used the wrong terminology. I had the second surgery which was the resection with a loop ileostomy. The third to reverse the ileostomy is scheduled for November. On the good news front when...
I'll try to answer as best as I can. Do you still have your rectum? If so, is your UC still active there? Mine was, I was still passing small amounts of blood. The surgeon and GI thought that the...
Thanks, fingers crossed! I keep saying 2021 is going to be a great year! I'm doing my best to stay positive....
Hope everyone is doing well! I had a total colectomy in March, take down in August and ileostomy reversal is scheduled in November. Not going to lie, this year has been the worst year ever! I started...
I have had the first 2 surgeries and my third is scheduled in November. I would try biologics first. Just my opinion. I was steroid refractory and tier 1, 2 and 3 meds failed....
I had "probable" PG following my first surgery to remove my colon. The 2 biopsies were inconclusive but the ulceration responded to a steroid injection, it was injected at multiple locations around...
Hi NSSG and CCinPA. I have had 2 nurse visits this week and have an ostomy nurse coming tomorrow. They have been extremely helpful and very compassionate. So far all is going well. Feeling a bit...
Thanks!...
Thank you so much for your reply. It helps to know that complete strangers are thinking about me. I am very happy with my decision. I just needed to get on a definitive road to recovery. I could not...
Thanks for checking in. I had surgery on Wednesday with a total colectomy and ileostomy. After meeting with the colorectal surgeon I determined the best course of action was to remove the colon. it...
Thanks, I'll take all the prayers I can get. I really hate that we are all suffering with this wretched disease....
I'm actually glad I'm here as is my husband. I just never thought that could happen. As much as I hate being in the hospital I know it is the best place for me to be right now...
Thanks. I have heard from the GI at the hospital as little as three days and from my GI as little as two weeks. My biggest fear right now is that it will not work and I will be burning more time...
Hi everyone, just wanted to give a quick update. I was taking 50 mg of steroids for nearly 2 weeks with no improvement. I started hemorrhaging early Saturday morning and had to be taken by ambulance...
How does Zofran compare to Emetrol? I have found that the zofran really does not work. I get such severe stomach cramps, even with Bentyl, that I end up throwing up. I actually felt really good today...
I had repeat stool studies done, everything is negative. I have come to the conclusion that entyvio is not working and my next med is Xelzanz. My husband and I had a very lengthy and frank discussion...
Thanks, your post alone makes me feel better. I hate this disease! I hope you are doing well. I definitely think that the pred is contributing to the depression....
Hope everyone is doing well. Just thought I'd pop on with an update. I went to 50 mg of pred back in January and was doing very well and tapering by 5 mg per week. One week on 30 mg and bam, full on...
Thanks iPoop, that makes sense. I love your tag line by the way, it is so true!!!...
@Sara - I started Entyvio in August and was just approved for dosing every 4 weeks. I had an infusion last week so I'll have another in February, hopefully the 4 week dosing will get me back on...
Are you on weekly or bi-weekly injections? When I was on Humira I was moved to weekly and that induced remission. At the time it was based on the results of a colonscopy and they hadn't checked the...
Hi everyone, Just thought I'd pop in and give an update. Saw the GI's NP, she was much better this time, thank goodness. As far as the cortenemas the entire practice no longer subscribes them. The...
Thanks everyone for the responses and apologies for the delay in responding. Spent the week-end resting and relaxing. I am up to 45 mg of pred and think it's just going to take a while to work since...
Thanks Straydog, I did get some natural no sugar added cashew butter and peanut butter and have been trying to eat that with crackers. Heard back from my GI's office, they recommend going up to 45 or...
@Sara14 - Trust me, if I could get in the with the GI I would completely by-pass the NP. I can't get in with him until February so I'm stuck. I started out on Uceris (because I hate pred), took 9 mg...
When I went to the ER they ran all the stool tests again (12/30) even though I had had them done on 12/16. I started Entyvio in August and was just approved for every 4 weeks. Just had a dose this...
Hope everyone is doing well! I started off the new year in the hospital with a severe flare. Spent 6 days in the hospital and am still struggling now that I'm home. Taking 40 mg of pred but it feels...
For women, a bone scan is recommended one year from your last period - menopause even if you have never taken steroids. This is to ensure there is a baseline and action can be taken early to help...
I am so glad I popped in here today. I just finished an 8 week taper of pred and I had serious brain fog and depression. It was difficult to work and the depression was horrible. It was so bad my...
I agree, the citrate free Humira is amazing! I have been using the new formula for several months and it is a huge improvement. I don't feel the injection and wouldn't know I had done it except for...
Just thought I'd pop in with a quick update. The Rowasa is doing the trick! Took a little over a week but the blood and M finally subsided! Today is the 6 week anniversary of quitting smoking! Quick...
Quick update, finally heard back from GI and Rheumatologist. Going to give Rowasa a try as it is mostly topical with little systemic absorption. Have been using cort-enemas for the last week -...
Thanks Q!...
Hi Quincy, stool is formed, about twice per day. There was an exception last week where I think my entire colon emptied itself but I have been good since. I think it might be some rectal inflammation...
Thanks iPoop, was thinking the same thing about the enemas after I posted. It has been such a nice long break from them I didn't even think about using them. My rheumatologist advised that I should...
Hope everyone is doing well. I have been in remission for over 2 years. I still had D and urgency issues until I started taking 2 tsp of Benefiber daily (started this about 4 months ago). The last 2...
straydog - I'll report back after I try the new formula. Sure would be nice if was just a pin prick....
ks1905 - that's what I thought because I couldn't understand why it had been available overseas but not in the US. iPoop thanks for posting the study. I'll report back once I have tried to new...
The new citrate free formula of Humira is available in the US! I confirmed with my specialty pharmacy that they have it and require a new script for the change. Wanted to share as I have been waiting...
Hope everyone is well. I just wanted to share my great news, received my biopsy results from my scope on Friday - no pre-cancerous changes and I am officially in remission!! I am so happy, I wanted...
Thanks 00hope00. Unfortunately there were was no number on the first result, it just came back positive and then a second result was posted that showed the titer. I wish they had some standard...
Thanks Lynnwood. There was no reference range on the lab result report. I saw the post you referred to as well and couldn't correlate it to the results on my report. I found a lot of information on...
Hi everyone, hope you are all well. I am looking for some information on a positive anti dsdna test. The result was positive and the titer was 1:10. What are the reference ranges on the titer? I...
Hi Poppie, anytime! I had so many questions when I was first diagnosed so feel free to ask away. I don't check the site every day but am on here a few times a week....
Hi Poppie, I took pred for about 4 months when I first started the Plaquenil, it was the only thing that relieved the joint pain. I took 20 mg for several weeks and then tapered very slowly, 5 mg...
Hi Poppie, sorry to see you over here on the Lupus board as I am used to seeing you over in the UC forum. I am taking Plaquenil and Humira, no issues. When I was first diagnosed with Lupus I took 400...
I think 2 weeks is completely unrealistic, just my 2 cents. When I started Humira I saw some improvement at week 6 and felt really good by week 12. Best of luck, hope it works for you!...
Thanks everyone! I didn't think it would matter but wanted to check with the "experts"....