How long do flares take to go down?

Good luck! Will be looking forward to your update after the procedure! Also, I don’t know how things work in the UK, but it’s advisable to ask for a written copy of your colonoscopy AND more importantly, the pathology report. It saves time if you ever switch drs and the electronic copy gets lost or not transferred over. Make copies and keep them in a safe place. Comes in handy to track your progress through the years. Here in the US we have to specifically request (sometimes in writing) for the biopsy report as they won’t just hand them out usually. When you get the report if you post it here, there are very knowledgeable members who can interpret it for you (not me!!!!! 🤣🤣🤣)

Hi! I hope things are going well.

I wanted to jump in and let you know that when I did my prep in hospital it was waaay way better and easier! The nurses are trained to help you and they have meds for nausea right there...and if you have an IV in place and become nauseated they sometimes place the meds in the IV and the relief is so quick!

It important to have the scope and find out where you are at, where you need to go, and what you have to do to get there.

I had times where I was getting better and suddenly had a bad day.... I started a food journal so I could see if there was something I ate that might have made my tummy more upset. I discovered that there were foods that I needed to avoid while in a flare. I sometimes still have to watch out for fast food or spicy foods.

On having reactions to medications when you are in a flare.... That happened to me too. Once I was on medication and better they started happening less and less. Hopefully that will happen for you too.

And finally.... On the person that is sitting by your side... Maybe an option would be to have a nurse or doctor explain that things have changed drastically...And that their journey does not mean that Your journey is going to go the same. I was diagnosed in 2015. There were some meds available then... But so many more now.

And on the stress.... When I have someone sitting beside me stressing me out while in the hospital... Oh gosh... My symptoms are much worse. I'm constantly running to the bathroom and nauseous! So while you are talking to that nurse.. or doctor .. maybe they could be encouraged to tell your visitor to visit alittle less or to be quiet about their journey or expectations.

I am crossing my fingers and toes that you get the answers you need so you can continue to get better.

Please let us know how it goes! You are in all of our thoughts and prayers!

Clo

Hi LilBoyo I guess you had your scope by now. Hopefully you're feeling better and got some nice food afterwards. Your "support" network sound like idiots, sorry. I have some family members like that, they make everything about them, no real empathy.... I had some psychotherapy so now I can mentally stick 2 fingers up at them when they are being annoying. Take care!

How old are you? If you're an adult, tell her to leave. Problem solved.

Sara14 said...
How old are you? If you're an adult, tell her to leave. Problem solved.

17.

I'm glad your scope is behind you and you are eating regular food.

Hang in there with everything. We are here to vent to.

Clo

You can definitely stay on this forum with Crohn's. Treatments are similar so no worries. I disagree with your docs about people usually responding to the 1st biologic. I don't think you were on either of the 2 meds they had you on very long and they were both of the same class (TNF blockers). There are other classes of meds that work differently. There are many people on this site who had to go through several until they found the one that works. What medication are they going to start you on?

I am not one of those who can interpret reports well, but someone will stop by who does. Were they able to get past the stricture and scope the full colon?

I know you are only 17, but is there anyone else you can stay with? She seems toxic for you and your health.

CC - without knowing how sedated lilboyo was - I also talk with the doctor and nurses during my scope and remember seeing things on the screen. I am only annoyed that I don't remember more. I was trying very hard to stay conscious!

Congestion is caused by a reaction of the inflammatory process. This can cause restriction of blood flow causing swelling in an area.
Erythema is inflammatory redness.
Granulomas are a specific concentrated collection of immune response cells as a reaction inflammation or infection. In the colon, they are a strong indication of Crohns based on the distribution.

Re your support person, is she a relative?
q

I’m sorry I don’t know what they are trying me on, but they said it would start tomorrow so I’ll be able to update then, and if it is another TNF inhibitor I’ll definitely talk to my IBD team and bring up some of the medications mentioned here; no point in not trying!

Everyone saying it was a bad jump to bring up surgery has made me a lot more relieved. I’m sure the doctor was just trying to make sure I was aware it’s always a final decision, but it did feel like I went from having every medication in the world to try to suddenly being on a timer.

As for the colonoscopy, they did apparently get past the stricture and do the full thing! At the time I thought it was just because I was young, but they were telling me during the procedure they were switching out to a smaller tube (this is usual for me, I need the smallest needles for blood draws and smallest cuff for blood pressure machines to work, so I didn’t even think about it) and it must have been to get through that. The report I think actually says they took 16 biopsies? Unless I’m mistaken? (2 to site A, 4 to site B, 6 to site C, 4 to site D. I don’t know if the ‘sites’ are always the same but that’s how my report refers to them) from the entire bowel. It does say “procedure abandoned” in the diagnoses: “mucosal inflammation, colitis and Procedure abandoned” but when I asked they said they managed to do the whole thing so I’m not sure what was abandoned. It also says “no complications”, though that’s not much help.
My premedication was fentanyl 100ug and midazolam 3mg, and I was very awake the whole time. I really didn’t feel tired until I got back to the ward, I just held one of the nurses hands the whole time and I think cried about how I didn’t want to be a nuisance to them. The notes say I had one or two episodes of mild discomfort that were “well tolerated” so I suppose they didn’t see the need to do anything else? I don’t know.

As for everyone worrying about my family member, yes I am aware of her tendencies. Unfortunately I am not in a space to be able to leave and be independent yet, but hopefully soon. I have a sibling I plan to live with when she’s got her own home (she doesn’t live in ours) and I’m able to leave. The dramatic family member did end up starting a massive argument yesterday, but surprisingly she wasn’t even concerned at all at the possible new crohns diagnosis and medications- she was upset that now my family are visiting me today instead of going to my distant cousins 21st birthday party because it’s an “embarrassment”. The drama took my mind off of the results, at least! I still don’t think it will settle in my mind until I get another one of those big leaflets with all the information on the new medication and have to start it all again. The follow up is just “awaiting pathology results” but with the strikes there is no date on that.

Your scope medication of fentanyl and midazolam is a commonly used combination sometimes called "twilight sedation" because it doesn't completely anesthetize you like you would have for a surgery. The fentanyl is a potent pain killer and the midazolam is a short-acting benzodiazepine that relaxes you and can make everything really foggy. For some people it's enough to put them out pretty good, while for others they stay fairly aware.

The docs might also want to take a different view of the stricture by doing either an ultrasound or a CT scan or MRI of the colon.