I just put my email in my bio for you to email me! ...
Yea remicade didn’t work for me:/ and I got diagnosed with PSC:( which is the scarring bulge duct disease that leads to liver failure over time it’s a manifestation of UC or some kind of link because...
Really? I’ve posted in my girls group and nobody could relate. I’m sorry it’s happening to you too, I really hope entyvio can still work.. you should email me so we can compare experiences if you...
It’s just so easy to think maybe it just stopped working instead ? ...
Even if it’s like rectal uceris and I can’t be on that long term? ...
Been on entyvio since late October, not sure how many infusions I would say 6 by now. Anyway, it’s been slow working like I knew it would be, BUT my symptoms were decreasing when I was comparing them...
I was on prednisone for far too long so often and now have several other heath issues so never again. I was doing uceris enemas for a little while but It seemed like it was the entyvio but I can try...
Many, I started in late October. And I was seeing slight improvement too, but now I don’t know if this sleeps me I should be totally discouraged ...
Just entyvio and imuran for my liver disease. Things were starting to improve.. i hadn’t seen blood in months so it seemed like entyvio was getting me back to normal and then this happens. Does this...
Hi everyone- I have had a rough year but especially rough month. Long story short, been flaring for over a year and was facing colectomy. Doctors wanted to try entyvio for a little longer and put me...
You're always a really great source on here and I appreciate that a lot! I read your experience. I'm wondering about the drain that you dreaded? Why is a drain placed in your butt i haven't read that...
I love how chill you are about the whole thing. It's nice that there is this reaction as well. I'm glad yours was uncomplicated to the point you were bored haha also I'm glad you had a good...
Thanks for getting back to me:) yea I'm not even thinking of the second step right now either I want to get the first one done and then recover and try to enjoy my young life. So basically it wasn't...
Alright I just had my surgery consultation this week and am planning for January right now. My first procedure would be a subtotal colectomy with end ileostomy planning to be performed...
Understandable you would be in the hospital for that amount of time for all that in one. That is a lot all in one! I suppose you wouldn't have been in there as long if you did it in two parts. I'm...
Yea! I never see anything positive about it. How long were you in the hospital for that procedure and what was it like when you were in the hospital for it? I have yet to experience a fistula so I...
I never read good recounts of the rectum removal surgery. Was it as painful as everyone claims? What did it feel like- as much as you can track back from all those years ...
Not sure how to tag/reply more than one person so hopefully iPoop, you see this too! Yes the internet has done me some good and some harm, and you are so right Nice, the reassurance doesn't last and...
Haha I know. Some are better with things than others. That's not the only surgery I will require so it is overwhelming!! Did you have a colectomy as well? [quote="Somebody"]...
You should feel empowered! I'm glad everything has turned out well for you :) I wish I didn't have all these extra anxieties and worries of what ifs creeping up on me. I want to so badly just be...
I'm in the same boat, last resort for me as well as there other treatments have failed me and the dysphasia findings in my biopsies at 20 years old is too scary to mess with. Sometimes it just feels...
Yea! Instagram has been a better source for me than the rest of the internet as I see many girls my age trying to life their most normal life. That certainly does make me hopeful on the days that...
It's not just this surgery it's any surgery that would give me anxiety. I just want to know the reality of it and if it's worse in my head than I'm thinking. Having to wake up with your body...
Never apologize for the "blabber" it is so helpful to me to hear things in detail. I don't have the best support system, I have a supportive boyfriend who wants me to do whatever I feel comfortable...
Posting this in UC and ostomy forum because it is relevant to both There's some days where I am positive about my outlook on surgery coming up, and I feel like it could be good for me and I won't run...
There's some days where I am positive about my outlook on surgery coming up, and I feel like it could be good for me and I won't run into as many problems as I think. but then there are days like...
Yea thanks so much for replying! Definitely helpful. What about the recovery process for that first surgery, how was that, pain wise, etc. Mine would be laparoscopic,mind sharing your first procedure...
From what I do know (which is not a lot) it is not your actual cheeks stitched together, just the hole is stitched up somehow. I wish there was more info out there on this! I was hoping some in this...
Yes I do have questions! Thank you! So you got your first surgery as just the end ileostomy and colon removed and then got your rectum removed afterwards? Since I am considering how I may feel after...
For some reason I didn't get notified I was getting responses to this so sorry for not responding. I understand the difference between the end and the loop, i was just curious if with my temporary...
I didn't realize I had posted it on the ostomy page until I couldn't find mine to refer back to on the UC page. I reposted it on here and marked to be notified if I got responses on the other thread...
Yeah I totally get the whole idea of why have it open if you don't have a purpose of having the hole there in the first place, it's just a really unpleasant thing to think about having your butthole...
Got it! So basically ultimately will have to wait and see what surgeon says. Going to try to get through first surgery and see how I feel and adjust to the ostomy situation. Give it some time and...
So does that mean that "Barbie butt" operation isn't always necessary even if you do need rectum removed ? Of course I will need to ask my surgeon specifically with my case, but some people I read...
All good advice thank you. And definitely will make my decision based off of my experience after the first surgery, I will only choose to "settle" with the bag if I feel I am happy definitely....
Thank you!! My question is, if I was going about it as a jpouch then the stoma they would make would be the "temporary end ileostomy" so if it's temporary how would I be able to stop there and avoid...
Okay interesting yea probably to remove rectum and sew closed your bottom. I'm trying to put off any surgeries I don't need and just focused on feeling better so if that means sticking with the bag...
As some of you know with my recent posts, surgery is the next step for me in this bad flare of mine with no response to any other treatments and no access to a majority of medication because it will...
You're probably completely right about my feelings changing and adapting once it happens. What other choice do I have? I'll definitely look into therapy to help adjust as well, I just have this issue...
Yea I am telling you to, because I don't need your negativity and I wouldn't sit here and poke fun at you for feeling any way you do about something that scares you. So if you have nothing nice to...
Okay understood, but I would appreciate if I didn't get made fun of and how I felt Wasn't less or a joke to some then. I deserve respect too and none of this is or will be easy for me mentally and...
? When did I use foul language in that post, I said if someone were to say that to me that is what I would say. I'm just defending myself and my right to feel scared like anyone else can. I didn't...
It's not the stoma/bag idea itself that is gross to me. It's the idea of seeing my intestine is gross to me. I don't like seeing my own blood. So I absolutely have every right to feel scared or...
Thanks for your help! I guess I just wanted to see if it was manageable or if it is as hellish and miserable as so many postings/stories I have read. I'm going to have a big talk about all my...
Thanks for sharing with me! I appreciate it. I too, can't leave the house anymore and called out of my shortened shift tonight because I just can't do it anymore . I know logically, surgery is the...
??? I never edited my post? Don't even know how to do that on here. I will absolutely post how I feel about new things on my own posting, they are my feelings about what I'm about to go through. out...
Sorry I forgot to share my condition again in this post but I've been in a severe flare for a year now and after finding dysphasia in my last scope biopsies and failed medications and incisions...
Yea i will absolutely consider looking into talking to someone about my fears because i feel like it definitely is considered a phobia at this point. Thank you for the advice ...