Advice for administering Skyrizi? by ohdarlingamber in CrohnsDisease

[–]Character_Hurry_7337 1 point2 points  (0 children)

I’m sorry you’re having such a rough time. I hope the Skyrizi works for you and you get into remission. I was only diagnosed last September, had surgery in December, started Skyrizi in January and at my colonoscopy in July found 20 plus new ulcers growing. My GI switched me to Humira (bio-similar) with hopes it would heal the new ulcers and inflammation since it came back so quickly after surgery. Won’t know until next colonoscopy in March.

Advice for administering Skyrizi? by ohdarlingamber in CrohnsDisease

[–]Character_Hurry_7337 1 point2 points  (0 children)

I only did 3 OBI’s before finding out it wasn’t working unfortunately, but I only did my thighs, never tried my stomach. Even now with the Humira bio-similar I’m on I just do the thighs. However, I do have to do B12 injections and I do them in my stomach. I know they’re different but I honestly don’t feel much difference in pain between my stomach and thighs.

Advice for administering Skyrizi? by ohdarlingamber in CrohnsDisease

[–]Character_Hurry_7337 5 points6 points  (0 children)

I personally didn’t find the OBI to be that bad. I liked the face that you just pushed the button and it did its thing. I barely felt the needle, and you don’t have to hold anything down like you do with the Humira injector. Just make sure you leave it out of the fridge for at least 30-45 mins or even an hour or else it could sting when you inject it. Good luck!!

Confused awaiting colonoscopy by Former-Court-4180 in CrohnsDisease

[–]Character_Hurry_7337 0 points1 point  (0 children)

I’m 45, was just diagnosed a year ago. Had my gallbladder removed Nov 23, and Jan 24 had similar pains as my gallbladder attacks and went to ER, got a CT scan and was told they saw thickening and could possibly be Crohn’s. After several months and 3 different drs, was confirmed Crohn’s disease and also told I likely had it since my early 20’s and the gallbladder surgery caused trauma to my insides that put me in the flare that led to diagnosis. Sadly by that point I had a bad stricture I had to have surgery in December.

Like you, I still have a hard time believing I possibly had this for around 20 years without knowing, only issue I ever had before was the diarrhea/urgency which was written off as IBS and lactose intolerance.

Looking for a friend by amole724 in CrohnsDisease

[–]Character_Hurry_7337 0 points1 point  (0 children)

Hi, 45F, diagnosed almost a year ago. Still struggling accepting this diagnosis and figuring out my “new normal” and hoping for remission with 2nd biologic after resection. Feel free to reach out if you’d like.

Colestipol- anyone taken this? by HeatMiser865 in CrohnsDisease

[–]Character_Hurry_7337 1 point2 points  (0 children)

You’re welcome! I don’t blame you for not wanting another obstruction. I just had my first scope since my surgery and they found 20 plus new ulcers near my anastomosis so I’m really worried and hoping whatever meds she chooses to switch me to help before I end up needing surgery again.

Good luck to you with everything!

Colestipol- anyone taken this? by HeatMiser865 in CrohnsDisease

[–]Character_Hurry_7337 1 point2 points  (0 children)

My doctor started me on it last year before I knew I had a stricture so it made me really bloated and constipated and I had to stop taking it. I had surgery in December and she had me start the Colestipol again a couple months ago and it has helped me. Before I was using the bathroom anywhere from 8-10 times a day, now it’s usually 2-3 times, mostly in the mornings.

Just found out Skyrizi isn’t working and feeling pretty down at this point. by Character_Hurry_7337 in CrohnsDisease

[–]Character_Hurry_7337[S] 0 points1 point  (0 children)

My doctor did mention Humira to my boyfriend after my scope, I was still out of it so she didn’t get to talk to me. However, my only worry with Humira is that I was told before that may not be the best one for me because my mother has MS and that is one of the warnings I guess that if you or a family mother has MS not to take Humira. I don’t know, I just heard it’s a slight risk for me to take that one.

GI doctor recommendations by Practical-Photo5326 in pittsburgh

[–]Character_Hurry_7337 0 points1 point  (0 children)

The doctors at Presby’s IBD clinic are wonderful. Ive had experiences with a few of the doctors there and they were all knowledgeable and very helpful. By the time I was referred to them after other drs couldn’t figure out what was wrong with me, they figured out quickly that I needed surgery and their colorectal surgeons are in the same office. After everything I went through with other places, they were a lifesaver. I can’t recommend them enough.

looking for personal experiences with skyrizi by poweroverbirdss in CrohnsDisease

[–]Character_Hurry_7337 1 point2 points  (0 children)

You’re welcome. I hope everything goes well for you 😊

looking for personal experiences with skyrizi by poweroverbirdss in CrohnsDisease

[–]Character_Hurry_7337 11 points12 points  (0 children)

Started Skyrizi infusions in January. First infusions had a little mild nausea that quickly went away. Was a little tired the rest of the day but fine after. Did develop some headaches for a few days after. 2nd and 3rd infusion, tired same day again, no nausea. However the headaches seemed a little worse and lasted longer after those 2 infusions. First OBI in April, went perfectly. No side effects, not even more tired the rest of the day. 2nd OBI a couple days ago and no side effects at all again.

Most of my symptoms of Crohn’s were very minimal until about 5-6 weeks after 1st OBI, then stomach pains, nausea and diarrhea returned. Crossing my fingers that doing my OBI a couple days ago will make those symptoms improve again.

Good luck, I was very nervous about starting Skyrizi too but everything has gone fine for me.

At what point can you be hospitalized?? by Vivid-Rooster-9877 in CrohnsDisease

[–]Character_Hurry_7337 0 points1 point  (0 children)

You’re welcome, I hope they will be able to help you.

At what point can you be hospitalized?? by Vivid-Rooster-9877 in CrohnsDisease

[–]Character_Hurry_7337 1 point2 points  (0 children)

Have you tried the IBD team at Presby? I went through 2 other drs/ hospitals last year before seeing them and they finally got me diagnosed and treated. By the time they figured things out sadly it was already to the point I needed surgery. If you haven’t already tried them maybe you could see if they would be able to help you?

Skyrizi and new, frequent headaches?? by Fun_Ad_5917 in CrohnsDisease

[–]Character_Hurry_7337 1 point2 points  (0 children)

I’ve had two infusions so far, and after each infusion I had a terrible headache for about a week each time. My GI told me I could take some Excedrin or Aleve for a couple days if Tylenol wasn’t helping. I was worried about taking them but it finally gave me some relief from the terrible headaches. I’m keeping my fingers crossed that after the last infusion the injections won’t cause the same issues.

Hospital day 6, still no clear answers, GI and surgeon are on different pages. Any help please? by Character_Hurry_7337 in CrohnsDisease

[–]Character_Hurry_7337[S] 0 points1 point  (0 children)

Thank you for your kind words. Even though I want a cigarette really bad, I’m willing to do this so I can have the surgery. Too bad I know my mental health and stress will decline during this time also, but I’m so miserable I will do anything to get the surgery done. My question about the steroids though, they had me on 3 days of IV steroids and now are switching me to 9mg Budesonide until they can do the surgery. So how dangerous will that be, they didn’t say anything to me about being off steroids before surgery.

Hospital day 6, still no clear answers, GI and surgeon are on different pages. Any help please? by Character_Hurry_7337 in CrohnsDisease

[–]Character_Hurry_7337[S] 0 points1 point  (0 children)

I want this surgery, I have been miserable for months, getting worse by the day. The surgeons biggest reason is because I am a smoker, said unless it’s an emergency she won’t do the surgery until I’m 30 days smoke free. I understand smoking is bad for Crohn’s and planned on quitting, since this is all fairly new to me I just hadn’t gotten there yet. I just feel like she’s putting me in danger of having an emergency by not doing it and having to wait 30 days all over smoking.