Glad it went well, thinking of you....
Thanks peeps. Time really has given me perspective on how very sick she was, and how the damage was physical and mental. Key takeaways are: get to the best care you can afford, and don't linger in...
Today marks the 3rd yr anniversary (and my daughter's 24 th bday) of the 1st of her three surgeries to restore her life. I find myself here, because this forum helped me in some dark hours. I have...
I'm trying to figure out if it was "adjusted" during the Jpouch surgery and if it means anything. Interesting redefinition I guess....
I have no words of wisdom, but wanted to let you know that your story touched me. I am working on being a kinder and less judgmental person, and perhaps your story has helped another...me. Keep...
You aren't in remission yet---keep track of this for your GI. You may need a supplemental med or dose adjustments....
Adjusting the Remi dosing and knowing if you are building antibodies are important steps. Insist upon it. The small weight gain shouldn't be an issue, although some metabolize it differently over...
Check the options of Anterior and Posterior methods. I may abandon by old, wise, stick by his old method- surgeon for a newer shiny model who has done tons of the anterior approach. Faster healing,...
Sorry Keith. A friend of mine with RA had her hip surgery while on a biologic-one of the newer ones. No one mentioned for her to stop, as the RA could come roaring back. I too need hip surgery, and...
I too have a long history here of posting my daughter's journey with this disease. You can search the Katmom stories in case they help. Surgery wasn't an easy decision and our timing was right. Too...
Thank you all so much for your wisdom. K...
My daughter was on low level antibiotics for acne in the months preceding the UC diagnosis and her microbiome is still messed up. SO many interesting new theories. The surgeries fixed the UC, so that...
Thx folks. The weight loss was months after the surgical recovery, and gains followed as if a switch as flipped. She has been trying high protein / low carbs and it is helping a bit. Thyroid is a...
My daughter is one year out from her 3 step jpouch surgery. Surgically speaking, doing fine. No infections, reasonable everything. Her eating and weight flux is a concern. First there was weight loss...
Hi: I know when something drives you in a primal way, that someone telling you to just "quit it" is silly! However, Pred is not the drug for you. Can they replace it-it messes with mood and...
welcome- we are all just muddling through, trying to share what works and what doesn't.:)...
Yep, stay hydrated with electrolyte enhanced water. Eat lightly. Not sure about any nuts or seeds if you are flaring. They can get you a RX if the pain is too much. Opiates slow down the bowel and...
And if you try all of that and get tired of the UC---go to Remicade. It does have some side effects but has alot of data and been in use a very long time. Stay away from the PRED unless it is an...
I don't know anyone on 2.5 of Remi. At some point if the concentration is too low, the antibodies can form. Sometimes, like with my daughter, no antibodies formed at all but the mechanism stopped...
Just don't let that cold get out of control. Pneumonia or other upper respiratory stuff is hard to get rid of when your immune system is compromised. Good to go easy on the acetaminophen, but I know...
Each flare can get tougher to treat, so try to nip this one. I'd agree that 6mp should be tried, but it takes so long I wouldn't be surprised if they put you on a course of Pred while you waited. If...
I actually have a son too- I only talk about my daughter because of the IBD. He had the same cyst after horseback riding. It was prob there but exacerbated by the pounding. Hurt like crazy. He had...
Hopefully you are on something else besides the Pred. That taper is fast, but if is not holding you, they will ask you to go back up. If you were not stable at 40, I don't know if you will get...
Happy anniversary too! The struggle takes its toll, doesn't it? I was looking for a piece of paper for my daughter and ended up going through the 6 years of medical files. I ended up sobbing on the...
I agree to slow down the process a bit until you settle the cdif symptoms. Sounds like yo u have fought a similar fight as my daughter did. Her surgeries came after fighting thru high school and...
My daughter was diagnosed at 15 and had her colon removed on her 21st bday. She had the 3 step jpouch surgeries and is doing great-very happy and has not regretted the decision. Now...there are...
Had to quit it at week 10, as it did not slow the UC symptoms enough. Doc said if there was no improvement at all, it probably would not be the mechanism to hold her. We were early adopters-first day...
The infections are difficult and do not underestimate them. They can cause serious problems-trust me here. I agree that Entyvio might be a good answer, but you may build antibodies to Remicade and...
Hi again, Mad Martha. Sorry for your pain, and it must feel frightening to not know what is next. Your colonoscopy should be revealing though, and then you can make plans to address the findings....
Don't let the bleeding go on for long without a change in meds or doctors. There are many many options for you. Keep reading on this site, and get to a university hospital system or the best GI you...
I cannot describe it accurately as I cannot remember how long it took my daughter to go back to normal, but it is a slow and steady process. Sounds like you won't have trouble. At 10mgs, your own...
Wishing you good luck and improved health-starting tomorrow!! Best...
Try to be kind to yourself. Don't underestimate what this disease does to you and your loved ones. It is a marathon, so try to take it easy. Do something nice for yourself every day-even if it is...
Probably a good question for the Ostomy forum. My daughter needed the time in between the 3 steps for mental and physical healing. I'd guess the 2 step would be ok if you are a candidate-the 1 step...
Oh Solomon Seal, I am so sad for your current state. We were in the same boat for a long time and my daughter's surgery was right when yours was- I remember typing to you while in the hospital. She...
When you are healed you can do whatever it takes to get your comfy body back. Some things just take a little more time. I too am glad the UC is gone. Be kind to yourself, work gently, eat healthful...
Sounds like you tried and suffered for long enough. Time to move to your new normal. Surgery is emotional and frightening, but if you feel your hospital and surgeon are pro's, it helps a lot. You...
I went right for the real stuff-progesterone and estrogen to settle it down. Helped with sleep and lovely flashes. My doc wasn't a fan of bio identical, due to inconsistency in production. I do have...
Foot doc should fit you with orthothics, though they work slowly. In the meantime wear tennis shoes- I spent a whole summer in Crocs. The spongy bottom helps. Stretch like crazy. Only 10% need...
That darn rectum can be so stubborn. My daughter felt guilty when they called the rest of her colon " mild to moderate", but she still had urgency and frequency ( and and and...) The Cortifoam...
To me the article speaks to the need to go to top notch pro's who are up on all the latest thinking. It can be a confusing disease and it takes awhile to sort out the symptoms and their potential...
You have done your best-seems time for the next logical step. Don't get sicker and create more damage to your body-some things cannot get fixed. This one can. 3 step is safest with pred dependence. I...
Still think he should have an endoscopy before long, and wondering about this GI. If he is still flaring on the pred taper, he needs other meds asap. I am in the hit it hard and fast camp. Rectals...
They can still see. Even if the inflammation is inactive, there is tell tale signs of the past. I pictured it like scarring, but don't exactly know what it looks like. Photos and biopsies are...
They had to stop a colonoscopy for my girl in the middle too. Said the spontaneous bleeding was too dangerous. They got high enough to confirm UC, but I always worried it was CD. Biopsy results will...
There is good advice above/before mine. When my daughter failed Entyvio, the doc said that if there wasn't even some improvement at wk 10, there probably wasn't going to be. I understand some are now...
Darn that is fast OM. My girl got sick hard and fast, but it still took 2 months for the hospital. I bet you are mad that he waited so long, but it human nature to deny and hope for self healing. I...
Trying link again,. Worth the read. https://www.sciencenews.org/article/microbes-can-play-games-mind...
Too soon to tell- stay the course....
All different. I am guessing your GI's office is skilled at getting authorization. Confirming they sent the letter is one step, and then confirming receipt by the insurance co is another. Might get...