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Hi Lisa,
My name is Megan. I am writing on behalf of our son, Nick, who has Downs Syndrome, little language, and Crohn's. When you have a minute,
could you please read my post under new member N, for Nick. Thank you. I am new at all of this. I am not sure how this works. Thank you, Megan
🙂
🙂just believe
I wish you the best you seem like a great person/ parent who cares so much
Hi Scottsma,
I am Megan , Nick's Mom. We are new at this. Could you please read my post and let me know what you think. Thank you very much, Megan
Hi Scipio,
I am Nick's Mom. A new member. I am not sure how all of this works. We live in Northern Cal. If you have a minute, could you please read our
welcome post, and let me know what you think.
Thank you very much,
Megan Dean
Hi there how can I message you privately with a question? Thank you
N
noorlaila
Hi there sorry, it’s an urgent question about recto fistula I would be so grateful I just don’t know how to message privately sorry
N
noorlaila
It’s about pregnancy and fistula - I’m sorry I came across your experience and I just want to ask a couple of questions thank you!
I have Crohns Disease.
Stricture and inflammation of my terminal Ileum.
Current treatment plan is Stelara, Budesonide, Methotrexate and Folic Acid.

Updated March 14, 2023
Hi there:) I know I don’t know you from Adams cat but I’m struggling with the remicade infusions for my son. He had one induction did amazing despite the six pokes to get the iv. He then had an inflammatory bowel obstruction a few weeks ago and was hospitalized for a week. In the time he was extremely traumatized with ivs and now the infusions have taken a turn for the worse. He almost passed out …he is 7 and still a sweet squishy baby. We are going to try oral versed next to see if that helps. But after that I don’t know what else to do. In the hospital they did anesthesia to get an IV and that traumatized him even more so that is off the table for my husband and I. I guess my real question is lolol…..humira. My doctor wants to do the remicade and says that works best buttttttt what about the humira? His last mri when we left the hospital looked beautiful (after other one infusion and high dose steriods during the hospital admission) so I feel like humira is going to be a good alternative …..how has the humira been for your little?
Pilgrim
Pilgrim
My daughter started Humira as her first biologic drug at age 4. She had 6 good years with Humira -of course we had dose increases and sometimes we had to add Methotrexate to keep things working.

We would have started with Remicade but we live so far from the children's hospital and needed to have another option.

It's so hard when they are so little. My advice isn't probably what you want to hear but there are so few options for Crohn's kids as far as medications with a good response and I think if you can keep him going on Remicade it would be wise. Once Remicade stops working then you have to switch and deal with the whole worry about bad reactions to the next medication plus waiting for the right dose adjustment that works....meanwhile sometimes they get sicker while you're waiting for everything to work.

Can the hospital bring someone in who knows how to help with needle trauma? Or maybe a really good bribe for after his next iv?

I've found it helps if I'm calm for my daughter, matter of fact about it, and a bribe doesn't hurt. She hates iv's and is hard to stick...we make sure she's hydrated beforehand. Sometimes it helps but mostly it just gets easier when they feel better.

My daughter is now 12 and has moved to the drug Stelara. It took over a year to work but it's going well.

You can send a note anytime.
I'm not drunk. But, I sure feel good buddy. How are you doing? Cheers!
hi there, I also started Infliximab this year and now was diagnosed this last week with prostate cancer. So you restarted Humira....is it ok to do that after RP or Radiation?
On December 28, went to the hospital as instructed by a nurse. I was vomiting the night before and much into that day. I got an IV and with CRP of 103, that should have been below 10. The doc has a father and brother with Crohn's and wanted to admit me, but due to that hospital receiving a lot of Covid patients, I could not get admitted and he told me to get an outpatient IV the next day. The next day I was not able to get DIspatch who come to your house scheduled as they were over-booked. I could not get a ride to Urgent Care, so I went without and further crashed.

The DIspatch nurse arranged for me to get admitted to another hospital, which did happen. I spent 3 days there, coming home on January 1, 2022. I joked, I spent over a year there. My Crohn's is active. I was told by a doctor from my GI office that I would be there for at least 6 days. I looked like hell, my first day.

The good news is that on New Year's Eve, after managing my stoma bleeding during a bag change, I got a little fed up and took charge. I got out of bed, walked the halls, and then started on solid food. Suddenly, with my circulation woken up, I was feeling and looking better. My lower left side was still and is still inflamed. With the encouragement of an awesome nurse, I turned around and started the New Year by going home. I am doing better. I am still a little miffed that 80% of the people admitted to the hospital did not have vaccines. It was my local hospital and another nearby hospital's turn to take the brunt of the Covid patients. Hospitals can't turn away patients, first come first served. It's just that I got all my vaccines and booster and those who ignored the facts, prevented me from getting admitted. Good thing the other hospital had a bed available for me. I am blessed.

I wish everyone a wonderful New Year. I do believe this will be a good year, maybe not as quickly as I want it to be, but it's about damn time I control my own life.
Hope you are having a great day and in remission. I just got approved this week to start Stelara Infusions. I am nearing the end of my prednisone taper this weekend. Sending :) across the miles.
Moderator- can I change name to PamelaW ?.
Lisa
Lisa
Hi - yes you should be able to - but please note that this web site is viewable to anyone (except certain areas that require a sign-in) so your info may be seen by anyone....
I have the same problem Really worried here.There is almost no literature online about this. Did your numbers went vack?
Unfortunately I am currently having what we think is a flare up of my Crohn's. Hopefully a simple course of steroids will be all I need to get back on an even footing.
I am in remission with inside hemorrhoid, and there's not a lot known about this drug Stelara with Crohn's but everybody different. I still have Fecal incontinence; hopefully, every four weeks will clear this up with 90 ml, and it was 90ml every eight weeks. I have been on stelara for about a year now.
Any British Columbia people on humira who might be forced into taking a biosimilars. Help! Don’t know what to do. There are 6 options... can’t find any research on which one is being prescribed more
Hello everyone, I was diagnosed with Crohn's in 2012 after 5 years of unexplained symptoms. I have been stable on Vedolizumab for 4 years. I live in the UK and love music and art. Feel free to contact me if theres anything you think I could help with x
C
Crabi
Hi, I know this might be a tough question but what was your gut pain like? i have not been disgnosed yet but they said my stool test showed positive, then my doc said he wasnt so sure because i had a scan with conrtrast last year when my gallbladder failed and it showed some very minor colonic wall thickening, also had an upper gi with small bowel and it showed clean, they did a endoscopy last year also and siad it looked good, they told me i had gallstone pancreatitis, but my doc said now hes not so sure it is crohns, i have my colonoscopy may 10th, anyhow, lol, my pain is on my left side just under my ribs heavy cramp and sometimes nausea, i dont get allot of loose bowel, more pain than anything else and its always on my left side. in November last year it went haywire, pain and nausea all the time almost a full year after gallbladder surgery, they put me on a low residue diet for now, i still have the pain in fact last night was ruff, i got up feeling shaky, tired, i checked my temp it was 95.1 which i know sounds messed up but allot of times i get that since i had a TBI about 8 years ago, what was your pains like? mine i feel great unless i sit down, so i stand all the time, after dinner i stand until later in the night watching tv then i sit for a bit which is when it starts, if i lay down it usually gets worse but then is gone by morning, does this sound like crohns?
Hello, my name is Rodney, just want to ask you ,do you have or know someone close that has crohns? Just wondering I like you answers to people you seem very nice, glad your your here...Rod
Hi! Thank you so much for your feedback! I took a little time to read about Dr. Grovit and read several of his reviews. Can you tell me more about his diet plan? We have started SCD, how is it different? I would appreciate any feedback you can provide.

I'm also being told that a fistula can only be healed with surgery. My son had a seton placed during his scoping procedure. Did your son or daughter's fistula still heal if a seton was used?
Hi Laragirl, I see you checked my story out as I have Crohns now for 48 yrs. What is your story or history or problems to check out some of us on this site, since you read mine, curious what your dealing with? I feel sorry for anyone showing up with this Disease as its a problem rest of your life, but to do what you can with what ever you have, you can find ways inbetween Flare Ups or p roblems to deal, . 48 yrs ago didnt know anyone with it, Drs didnt know much, eat what ever doesnt bother me?? Had to get sick to rule that food out, no help back at that time as DR were learning with patients like me so long ago. Now its common and people I know and many you meet another new one SAD as lots to deal with and still try to have some kind of a life, and year by year, I found out how do so most all and not let it stop me from trying to live a semi normal life and do most with full time Diarrea from intestines being removed, I am now left with only 1/2 small intestines with full time Diarrea, cant go anywhere not knowing if bathrooms close by, but have made most work in 48 yrs with Crohns.
What is y our story or what are y ou dealing with? C J
Hi CJ, You have had a rough time as you say, they didn't have the meds and treatment they have now. Of course, this is subjective as it is a vey individual illness and what treatment suits one person, may not suit another. I know that from ,my own experience of bad reactions to meds : Pancreatitis because of one . I am pleased to hear you are more settled as I am at the moment, and feeling better. I hope you now keep well. Kind regards.
I have had Crohns Disease since age 20 for now past 48 yrs. 4 resections for the first 20 yrs with Crohns as it first hit me big and hard in the beginning first 20 yrs of this. Last resection was 1988 and no surgeries since, thankful and better medicine so not more removed. I now am left with 6 ft only small intestine as 48 yrs ago they didnt have the medicines they have now so removed some when flare up and in hospital over and over, removed the bad parts of intestine collasping. I have been on Humira for 3 yrs, and active Crohns returned 2 X so they took me off that and now on Stelara past 6 months, so far doing better.
I kept working full time, good owners felt my work was more valuable then so often in and out of hospital from intestines collasping and flare ups but as years and removal went on, I became less sick, learned better diet and foods to help me feel better adn past 20 yrs of it I get by and deal with it, fewer hospital and dont always feel great, but do good, active and learned how to try and keep up what I want to to and not let it take over or ruin my day, work thru it as much as I can and happier, and active with it and do ok over all.
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J
jazzygirl52
I had ulcerative colitis from age 13 to my 40s then it was crohns, had colon cancer in 2011 and they removed my large intestine and appendix. Surgeon now wants me to start thinking about ileostomy . this option freaked me out but if m y rectum has to go, I guess it has to be. Any ostomy folks?
Merv S
Merv S
Never dismiss the prospect of a second opinion, if that is possible for you.
F
Flynn
Scar tissue and strictures from previous Crohn’s surgeries have been quite problematic for me after 20 years of UC/Crohn’s. Sometimes the rectum needs removed for Cancer but other times strictures and scar tissue and the disease itself can trap the natural lining and mucous that we all shed in the rectum. If that builds up and unleashes, it can go septic. I had this happen to me and it went straight to my liver, causing a very serious abscess. Ileostomy’s aren’t so bad. It’s an adjustment but hasn’t held me back from anything (except wearing a bikini lol). I teach spinning, mountain bike, hit the beach, etc. My prayers are with you. God Bless!
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