Has anyone ever heard of someone being diagnosed with "Crohns Colitis"? (not Crohns OR colitis) My son had Ulcerative colitis so I am far too familiar with UC, and my 30 yr old niece was recently...
Has anyone ever heard of someone being diagnosed with "Crohns Colitis"? (not Crohns OR colitis) My son had Ulcerative colitis, so I am far too familiar with UC, and my 30 yr old niece was recently...
BTE, So sorry to hear what you are going through. But I have a success story for you regarding the decision to have surgery... My son was diagnosed with severe UC at age 14 (3 yrs ago) and we had...
My son was on VSL3. our insurance only covered the VSL3DS (which is the "double strength") For some idiotic reason they would not cover the normal strength. you may want to have the pharmacy check to...
Hi all, It's been awhile since I have been on this forum. My son, Brandon had his JPouch and takedown surgery two years ago March and I am glad to report that he is doing fantastic. However, my 30...
I did want to add one thing... we recently visited the eye doctor due to changes in my son's eyesight. They are having us see a Glaucoma specialist due to changes in his optic nerve that they are...
Hi folks,It has been a little over a year since I visited this site. But a friend of mine has an 11 yr old granddaughter that has been quite ill lately and I was telling her how this site was my...
thanks for all of your replies. wishing everyone well!...
Thank you Sue!!...
he is doing well.. thank you for asking. Takedown surgery was in March. spent the next few months getting acclimated to the Jpouch. He has had some other GI trouble that ended him back in the...
Not sure if anyone knows that answer to this Question: Once someone has had JPouch surgery, do they still have UC in the section of the rectum that was not removed with the removal of the large...
Question: Once someone has had JPouch surgery, do they still have UC in the section of the rectum that was not removed with the removal of the large bowel? I was getting mixed information on this....
wishing you the best, I hope that they figure out what the problem is quickly...sending positive prayers your way!...
How nice to find about this Photo album! it is so great to put a (screen)name with a face! Hope you dont mind, but I uploaded a photo as well! Have a great day!...
The loop ileostomy (phase two) will replace the end ileostomy (from phase one) but it will be at the same stoma opening site you already have. My son had to switch sizes on the wafer and bag he used...
NewShiny... what my son found to work for him the best regarding the "butt burn".. I buy the Huggies Brand sensitive wipes (some of the other brands had to much alcohol and burned) and Bordeaux's...
He said they lasted about 1-2 weeks. Now he has none. we are still watching what he eats as he has been waking up with stomach pains (which they think is more of an acid reflux) but we are getting...
The best of luck to you and it sounds like you are doing fabulous! My son had his takedown surgery one month ago. How funny you should mention the "phantom stoma". He still finds himself reaching...
Kazygirl, My 15 yr old son had the 3 stage surgery. His first surgery was emergency surgery due to severe ulcerative collits that affected his entire colon and none of the meds worked- we tried them...
Yes, he does go to the Clinic to use the bathroom. he is under the 504Plan and has a clinic pass that permits him to leave the classroom at any time without explanation. But he doesnt for fear...
His doctor said it was probably reflux as the pain was under the sternum above the belly button. But now the pain is lower, just above the belly button and radiates to both sides of his belly button....
Is it possible to do damage by "holding it in" too long? My son holds it ALL day while in school because he does not want to use the bathroom at school because he doesnt want anyone to hear him. Then...
Thanks so much for the responses. Collicat... you definitely put my mind at ease. Today was a much better day. He had FCAT testing at school for over 2 hours this morning and I was so worried he...
Hi Folks, It's been 4 weeks since Brandon's takedown surgery. So far, so good. He was back to school after 3 weeks but the last two days have been awful. Non-stop watery diarrhea. Have tried Imodium,...
Theresa, First, let me say how sorry I am that you had to go through all that pain. I remember all too well when my son was going through that. But secondly, and more important, I am so glad to hear...
Thank you all for the valuable advice!! I cant wait to share it with my son. The best to all of you!!...
Does everyone who has a takedown surgery go through these tests? What happens if they reveal a leak? More surgery needed? Thanks...
Suebear, thanks so much for the feedback. I am mostly concerned about his ability to go back to school after the Takedown. It doesnt sound like that will happen if it can take weeks or months so...
Hi All, I hope this finds everyone well and healing! Its been a while since I have posted as things have been "steady" lately with Brandon. His Stage 2 JPouch surgery in December resulted in Ileus...
Thank you all so much for the feedback. Much appreciated!!...
Will the stoma look different if someone is dehydrated? Will it look more wrinkly? I am worried that Brandon is getting dehydrated again...headache, stomach cramps, etc. I am pumping the liquids into...
Well, we have made two trips to the surgeon's office to have his incision checked in the last week 50 minute drive each way) just to have them tell us there is nothing to be concerned about....
My son had experienced the same thing the other day after eating a bag of chips. He was recently released from the hospital with Ileus and a partial blockage so that was the first thing we thought...
Isn't Benzoin Tincture what they use during surgery around the steri-strips? we saw the surgerical nurse at the Cleveland Clinic the other day because one of the incisions had started "oozing". she...
The odor from the bag definitely will get better with time. We tried using the M9 drops but afer about 2 weeks, the odor really went away. we stay away from anything gassy, (which also gives him...
Can it be too tight? We changed the wafer and bag this morning (due to an early morning unexpected leak) and the Stoma nurse told me to put the barrier ring around the stoma, instead of on the wafer...
@amused, Love your screen name! I guess it does take a good sense of humor to get through all of this! My 14 yr old son is scheduled for his takedown surgery on March 16. He has had many...
My son had had the same issue when he had his first surgery last August. He developed a horrendous rash under the wafer. It looked like a thousand tiny blisters and very red and irritated and itched...
I am very confused about the SureSeal rings and how they work. Does this go over the wafer but not over the pouch? are they used just during showering and do they cover the stoma? Sorry if this is...
, Were you at the Cleveland Clinic in Weston, FL? That is where my son was operated on and he received the best care there. I can totally relate to your experience that you received in the local...
sweetpeasmom We have the sign problem with the loop ileostomy being an odd shape. The end ileo was so much easier to cut the wafer for. I have to cut the wafer for my son and with the loop ileo, I am...
Hi All, Looking for some feedback.. One of Brandon's incisions has started oozing pus, which in my mind is the first sign of an infection. It started Thursday evening. The incision just above his...
sweetpeasmom So sorry to hear that she is having complications... we know about them all too well. Our last surgery was stage 2 Jpouch, released after 5 days then back in the hospital 3 days later...
Thanks for all the feedback. the Dr has advised us that it is Paralytic Ileus which often occurs after abdominal surgery. He did have a partial blockage as well, due to the lack of motility in his...
Brandon was readmitted to the Cleveland Clinic on New Year's day after 9 hours of continous vomiting. His heart rate was at 140 (he had tacchycardia) and he was severly dehydrated. CT showed blockage...
I just received an order of Eakin seals from our medical supply company (we are trying these as the Adapt barrier rings seemed to swell up to much and I am afraid they will block the stoma opening)....
Congratulations on a successful Part 1 of your journey. My son had his in August and just had Part 2 last Friday. We also had a hard time with the odor in the beginning but it definitely diminishes...
Brandon was released from the Hospital after his JPouch surgery after 5 days. All went well other than some excessive bleeding from the drain site. The prior two surgeries were done laprascopically...
Brandon is in the OR for phase 2! He is excited about moving forward towards his reconnection surgery. I learned this morning that this surgery wil form the Jpouch, remove the rectum and connect the...
esoR, After the lithotripsy, we were able to strain the urine and the few particles that got caught in the strainer were sent out for analysis. They told us the stones were calcium. They told us to...