I had the flap surgery Aug 1 and so far so good. Pain lasted about 3 days. Only took pain meds the day of and day after. Lots of sitz baths helped. As well as lots of rest. I have another exam in...
Hello! I just had the advanced flap surgery 6 weeks ago. Went back to work after 4. It still drains but my Dr said that was to be expected for awhile because 1. I had two fistulas connected to each...
I drink soda, tea, and coffee. Thy dont bother me but alcohol does! Milk doesn't. Some coffees like the blended or super Strong stuff will give me diarrhea so I avoid it if I can....
location before diagnosis -Sunny California location during diagnosis- CA CurrentĀ location -CA In case you relocated: If currentĀ location is to a sunny state from a cold state, do you see overall...
Sorry to hear you've joined the club. When I developed antibodies to the Remicade, my doctor took me off it and put me on Humira, I don't take anything orally. Good luck!...
I have this issue. I believe its actually common with Crohns. Dont feel alone. I always drive myself and always know first, where the bathroom is if going out. Never took anything for it as I think...
Hello guys! So I've suffered with Crohns since graduating high school. Had a 5ft bowel resection in 2006. I was great and taking nieds for 10years before I developed a large perianal abscess which...
Hello! I had a perianal abscess (internal) with 3 fistulas all occur within the last 2 years. I had it drained and was off work for 6 months and unable to do much. No sitting, laying on my back. Do...
The place I use to get my Remicade infusions does home infusions regardless if you have existing ports Or not. They do it for those who are too sick to leave the house. Some insurance doesnt cover it...
I broke out in a psoriasis type rash all over my arms and frame of my face after a couple Remicade infusions. I even had a reaction to the first infusion where I couldn't move without intense pain....
I had a 10 yr remission after a bowel resection and then bam, perianal abscess and fistulas. My surgeon and gastro both said I should have been on meds the entire time. If I were you I'd definitely...
I have a fistula with seton placement Right now and my surgeon said it needs to be kept really dry so I keep two pieces of gauze folded in half pressed up against the seton and change as necessary...
I developed antibodies to Remicade after a few months. Started with severe joint pain and then psoriasis/lupus symptoms. My gastro took me off and started me on Humira in February. No side effects as...
I sometimes have something for lunch and see it again by dinner so I wouldn't be surprised. However I've never done the pill cam....
There's Gatorade that's diet you can get that's less salty. I had zero problems with this prep....
Humira is doing better for me than Remicade. And I don't take anything orally....
I have a removable shower head and I did a ton of sitz baths. If I had to use the bathroom at work or just wanted to freshen up, baby wipes. And they were recommended by my surgeon who put the setons...
It brought the feed up to the top so I think posting here is fine. I had the same exact issues as everyone listed abov . Psoriasis with Remicade about 6-7 months into treatment. My Dr has changed me...
Thanks for all your feedback!...
Thanks everyone! I can't afford to gain weight. That will just be the icing on the cake....
Brave. My surgeon and GI don't even talk about an oral medicine to go with the infusions/Injections....
I was in remission for 10 years and was not on any kind of medication. Then in December of 2015 developed abscesses and fistulas and started Remicade again in April of 2016. My doctor says I'm...
Anyone else on Humira have any stories to share? I've only ever used Remicade. I'm nervous about the self injecting and I've read it causes weight gain, which I can't afford to do! Input and of...
1 or under seems to include zero...but I'm pretty sure my point was still clear....
The reactive protein should be 0 or less...apparently...
I take Remicade and last week my doctor scheduled me for the Prometheus test for tnf levels. I'll get results this week. I've had 2 reactions with Remicade. Second dose I have all over body arthritis...
Fistulas arent just holes in your intestine. Not true at all . And I have a seton in my fistural currently and have intimate time with my husband frequently no problem. My surgeon says I am not...
Just be careful because when your on Remicade you're more susceptible to catching colds and flus because your immune system is down. But it should just be like any other time he catches a cold or a...
I place gauze up against the drainage area. Helps a lot. Remicade is supposed to help and other meds like it. But honestly sometimes its permanent....
I didn't go back to work immediately after my setons were placed. I've had a total of 3. Currently I have one left involving a lot of sphincter muscle so it's a complicated procedure and my surgeon...
I have had 3 setons in total. I currently have a seton in that involves a lot of the sphincter muscle so my surgeon is leery about surgery because of possible incontinence. We will revisit the idea...
I've done 4 doses.of Remicade, so a few months of it. I hope that helps with the healing of the fistulas. I just went back to work recently and fear after the fistulotomy I'm going to have to go back...
So I have 3 fistulas and all will need a surgical procedure. My surgeon mentioned filleting them. Has anyone ever had this procedure? What was it like after? Pain?...
I became a member back in 2002 but couldn't get into my old acct and had to recreate it more recently. This forum saved me! Totally a godsend!...
I had a reaction to the first one, and postponed my second one a week or two. No issues....
I have 3 setons for fistulas and a malecot drain for a perianal Abscess. My setons aren't the cutting kind, they are basically there to keep the tunnel open for the fistula to drain and heal. I...
Anyone ever had an internal abscesses with a Malecot or mushroom drain And Seton's and still gone swimming in a pool? My surgeon says it's okay. I still wonder. Felt like it may pull water in. Seemed...
I had a bowel resection in 2006, and they attempted to do Laparoscopically But my condition was far worse than they thought and I had to be opened up from under the breast bone to belly button. I had...
You can take Tylenol extra strength till you can get something else but yeah my surgeon said no motrin, Advil, etc. Be careful if you get a script for an opioid as they cause constipation and that...
If you have an absorption issue I don't know that anything by mouth would actually help. My surgeon said Motrin, Advil etc are all bad for Crohns but Tylenol is fine which I don't think works that...
I didn't start the vitamin D till this week and get my next Remicade in just over a week, 3 loading dose. Anyhow, the flushing after, of extra fluids seemed to be what I missed the first time and I...
I was on it when I first was experiencing Crohns onset. I stopped getting a period. One shot a month. And it didn't affect my Crohns. Didn't notice any change in weight or any other side effects or...
I had a reaction to my first round of Remicade. Severe arthritic pain that moved through my joints for 5 days. After my 2nd dose I had no issues, so far haha! The only difference was after the second...
Not many people who aren't ssuffering/living with Crohns can relate to how we feel. And more often than not try to suggest things. Its like you obviously don't know a lick about the disease...sorry...
Although I don't have any children, I can relate. I had a bowel resection 10yrs ago. They removed 5 ft. It was a hard recovery but put me in remission for 10yrs and without meds. Goodluck!...
Also, I don't drink. Period. I find it doesn't work for me and doesn't agree with my Crohns. Goodluck! Sometimes we just gotta be testers for our bodies and see what hurts us. š£...
I'm pretty sure they can heal but you are higher risk for their return. My surgeon advised me that in my case the setons will stay in for quite some time. He also gave other options for getting rid...
Thanks Debbie! That's what I do, sit at an angle haha or sit on my feet with my leg tucked under me. I can't wait to have all the equipment, so to speak, removed! Thanks for your reply!...
I have 3 sep setons. I've had then since December. My surgeon said once the Remicade starts working I should be able to get them taken out since it'll help them close up. I also had an abcsess so I...
Going back to work in a few weeks and still have 3 Setons in and a drain coming from the Abscess. I tried a donut pillow when all these issues first started and it wasn't comfortable. I was thinking...