I just needed to share with someone how grateful I feel today. I was approved for social security disability! Not bragging or anything just grateful that I have this financial benefit. My husband...
I'm a little late, but Congrats! You are a strong lady for living your life despite this messed up disease....
If your procedure is anything like mine, you will be sent home the same day. Crazy I know. I actually worked from home after about a week. Unfortunately, my procedure was botched (don't freak out). I...
Hi Stoneage, Have you talked to your doctor about these episodes? I don't want to alarm you but ir sounds like it could be a blockage of some sort. I had similar symptons that turned out to be scar...
I have had issues with scar tissue. But I feel it's more to do with years of inflamation than with surgery....
Thanks for posting this, it gives me hope that there will be more meds after stelara. I've exhausted everything else....
Glad it seems to be helping. Also, happy there are other meds in testing as I'm on my last one that is available. Fingers crossed you continue to improve!...
With no changes in symptoms and a clean scope I would think yearly or every 2 years. Sometimes I think drs go by insurance standards and not individual csses. Glad you are doing ok!! I'm jealous......
OMG I forgot about the creepy crawly feeling! I'm glad you're feeling better and the drops are working....
Have you looked into a sublingual tablet? I used these in the past and they worked well. I found them at GNC....
It could also be a fungal infection. Do you have a stoma nurse you can see?...
I'm currently unemployed so any amount from disability would be helpful. And since it's just DH and I so kids aren't a concern. My body just won't do it any more, my days consist of good intentions...
Thanks for your replies. I'll get started asap....
If you are in the US and have applied for disability how did it go for you? I was speaking with my PCP this morning and he is suggesting I try for it. Between CD not responding to meds, a new...
I'm not laughing at you but with you! Last month while prepping for a scope a couldn't figure out why my stool was a weird green. Then it hit me, I drank a yellow sports drink and blue jello. Yep...
It took about 3 months for me to start seeing results. But I had just had ostomy surgery and hadn't been on any meds for 5 months. I hope you see results soon!...
I've been on it for a year now, so timing isn't the issue. Just this nasty screwed up disease! And a body that keeps trying to knock me down....
I had a follow up scope yesterday to see how stelara was working with the addition of methotrexate -- not the results i wanted. All the remaining colon ( I have an ostomy) still has moderate disease....
Tcherkate, I haven't been to UPMC in awhile due to insurance issues, but there are great IBD docs there. So hopefully they will be able to help you get a diagnosis and treatment....
I completely understand what you are going through. I'm job hunting right now and the anxiety kicks in every time a get a call. At 58 I don't look forward to the whole process, I think it's harder...
Your issue with the nurse just shows how we have to be our own best advocates. I hope the stelara works. I've been on it for 8 months and my scope shows active disease sigh. We added methotrexate and...
Sorry you have to deal with a lovely RV fistula, they're the worst. I hope the stelara brings you relief. I wasn't that lucky and ended up with an ostomy. Did you try antibiotic therapy fot it? It...
Hi Noodles, I had my husband here after surgery but I was alone for approx. 10 hours a day. As long as you have some one who can get you out for groceries, appointments etc I think you would be ok....
It sounds like it went well. I was also surprised that it didn't hurt too much. Good luck getting to remission on it....
Been using them since April, no big issues. One minor issue with my last order missing something but they over nighted it....
OMG, I meant cimzia. Sorry about that....
Is anyone using methotrexate in addition to stelara? I had my 6 month scope after starting Stelara yesterday and the news wasn't good. What is left of my colon (surgery for ostomy was in April) is...
I empty my pouch several times a day. It depends on what and how much I eat and drink. Consistency ranges from liquid to pasty. Dehydration is a concern with an ostomy, so I make sure to drink lots...
Your pain and symptoms sound a lot like what I experienced from scar tissue. I went through several tests that came back inconclusive. I asked my GI if the pain could be scar tissue and he wasn't...
It could be a side effect or possibly Crohns in your esophagus. I had a bout of this years ago, at the worst part I had what could be described as chest pains when I swallowed....
I put in a call to the doctor who ordered the MRI to see what he/she thinks. I wouldn't be concerned about the D but the pain is concerning especially if it's that bad....
Compared to when I joined years ago it's at a snails pace now....
I had an attempt at repair a couple of years ago rhat was unsuccessful. But mine was very low and there was so much scar tissue it just didn't work. I wish you luck. Of all the issues I had over the...
I have crohns and had most of my colon and my rectum removed in April and I'm still on meds. Currently I'm on Stelara since I've failed everything else. I've never been told I would be going off of...
Good to hear from you! Glad to hear you are doing well (for a crohnie)....
I've been on both and had none of the scary side effects. My advice is always that you have to choose scary meds or quality of life. It's sad that we have to worry about such things when we're just...
Yes, it's pressure ulcer from me trying to use a convex product. I've found a product that works (non convex) but now have to get the dang ulcer to heal up....
So, I'm dealing with my second peristomal ulcer. The PA and wound care nurse are at a loss as to why it isn't healing. They feel it might be due to Stelara, they have another patient with crohns that...
I have to agree, if you've had a recent scope that shows no inflammation then it's probably the Entyvio. I had no such issues on it. But I did have severe joint pain on Remicade....
What a lousy birthday present!!! But happy birthday anyway. I had a colostomy in April and while I didn't have any urinary leakage I did have more of an urge to go more often. I figured it was...
Definitely go see a wound care nurse. It took a good 6 weeks of treatment to heal one ulcer and now I have another. Seems to be a never ending cycle for me....
Yes, the bag gets wet. It's not underwear but I think there is a shower bag product out there that you could use to keep it dry....
Hi Murzik, I swim all the time with no issues, but I guess it depends on what product you are using. I tried using a gallon zip top bag and pink tape when we went to the beach but moisture...
I'm not sure if it's the Cymbalta helping already or if it's just that I'm actually sleeping better on it, but I feel sooo much better than before I started it....
I hope you get to go to LA! It's nice to get away for awhile even if we can't get away from crohns or an ostomy -- ha ha For thick out put I find that juice and lots of water help. The coloplast...
I just got back from seeing my pcp and he is switching me to Cymbalta. Ever since my ostomy surgery zoloft just isn't doing it any more and I'm down in a rabbit hole right now and can't seem to climb...
Depending on where you live are you able to go to Cleveland? Or even Pittsburgh (I know going out of state might be an insurance issue so that might not be an option)?...
Every abdominal MRI I've had is a combo of an IV contrast and drinking a couple of bottles of contrast. When was your last blood work? I only ask because if something is out of balance it can cause...
I understand why you are so frustrated. How long was the dr. intending to keep you on steroids? I've never been on them for more than 6 weeks at a time, but I know others have been on longer term. I...
Sorry you're going through so much, it's never straight forward with us is it? Did you tell your gyn's office how heavy the bleeding is? I would think if they knew, they would get you in now. When I...