Posted by pixiesndust on November 23, 2008
- before it all began
Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments! my email is firstname.lastname@example.org
I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.
Casey’s Blog and Photos Here
Posted in UC | Tagged: Ileoanal anastomosis for ulcerative colitis, IPAA, ostomy, ostomy bag, restorative bowel surgery, stoma, Ulcerative Colitis | 2 Comments »
Posted by mark on August 8, 2008
9 months after my “takedown” surgery, here is an update on my status. My life 9 months with my jpouch now is completely normal, I don’t think about being sick. I don’t worry about what I eat (like UC days) like pizza, in my UC days I would eat pizza but I do it knowing I was going to feel awful afterward, now I can eat and I don’t worry. Of course, I don’t eat pizza much – I do try to eat healthier than not, but I do splurge for some good junk every now and again.
BMs in 24 hour: Going to the bathroom 6-8 times a day has just become part of my routine, because I don’t feel sick, there is no urgency so when I have to go thats it, I have to go. I don’t have any urgency, and no leaking. The consistency of my movements is pretty normal, a lot like before I had UC, basically formed and looks the same. Here is my BM schedule for those of you interested:
2 BMs when I get up and start my day (don’t eat breakfast)
1 BM after eat Lunch
1 BM before dinner
2 BMs after dinner before bedtime
1 time in the middle of night between 3-4 am
Gas: Simply put, I am pretty gassy. My gas may be from metamucil or what I’ve eaten. I have found that the gas is a lot of what I realse during the daytime when I go to the bathroom, sometimes the gas puts pressure hurts in my abdomen but when I pass that I feel fine.
BM noise in the bathroom: Sometimes it is quiet but sometimes it does sound pretty splatter like.
Weight Gain & Body Changes: My stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo https://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay Megan likes to tease me about my “middle-age bulge” – she thinks its funny.
Sexuality: I have some again, thank goodness! UC days it seemed sex wasn’t a huge interest. Now, I feel healthy and normal, and I have full function – no physical problems, all my parts seem to be working well. And my interest or libido is back, maybe not like before UC days but I’m also not a youngin’ these days.
Medicines: 2 imodium in the morning, spoonful of metamucil in the morning. And then the same at dinner time. What I think is that when I don’t take the immodium or metamucil my BMs just become more liquid, and more liquid means more butt burn. Therefore, the goal for me is to keep the BMs more solid. The immodium and metamucil do not seem to cut down on the # of BMs, just the consistency.
Drinking Alcohol: The big question asked is can drink with my jpouch? And the answer is YES, I do. Here is what I’ve learned for myself (of course everyone is different), but for me, light domestic beers don’t bother stomach, things with high hops (microbrews, etc..) seem to be too heavy and I feel bloated and I feel hungover from drinkinng even 1 beer. Red wine and thats been fine. Crown Royal and Coke doesn’t bother me either. Other than that I haven’t tried many drinks. Also, I don’t tend to drink so much that I’m drunk, just more causal.
Butt burn: Don’t really have it, if I eat or drink poorly and that makes my BMs more liquidy then I will have some burn, but overall this isn’t an issue for me at all. And if I see the burn coming then I do whatever is needed to get my BMs thicker.
I LOVE MY J-POUCH – I HAVE ZERO REGRETS! Mark
Posted in UC | Tagged: anastomosis, bowel problems, bowel resection, bowel surgery, colitis, colon surgery, colostomy, diarrhea, IBD, ileo-anal pull, Ileostomy, inflammatory bowel disease, IPAA, J-Pouch, Jpouch, proctocolectomy, restorative proctocolectomy, Ulcerative Colitis | 53 Comments »
Posted by mark on May 11, 2008
Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedodwn’ is 2nd surgery). Step 1 was done in early July 2007 and he was in the hospital for 5 days . Thankfully, he experienced no complications from this major surgery. Step 2 surgery will happen after step 1 recovery. See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal
Mark had Ulcerative Colitis (pancolitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to committ to the surgery. Many dietary and herbal options were tried as well. Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets. It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted. The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy. This has been the best decision for his health and quality of life. Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..
In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency. Then the related symptoms from those main symptoms were of both physical and emotional in nature. The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch). Go to this site here if you want more info: J-Pouch Illustrated. And Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.
Posted in Family, Friends, Ileo-anal anastomosis, Ileostomy, j pouch pictures, j pouch surgery photos, J-Pouch, Jpouch, Jpouch Surgery, living with j pouch, living with j pouch photos, Living with jpouch, Photos, Support Systems, Ulcerative Colitis | Tagged: colectomy scars, colitis surgery, Family, Ileoanal anastomosis, Ileostomy, IPAA, j pouch photos, j pouch pictures, j pouch scars, j pouch staple or stiches photos, J-Pouch, Jpouch, laproscopic, loop ileo photos, loop ileostomy, loop ileostomy photos, ostomy, Photos, stoma, stoma photos, Support, UC, UC surgery photos, Ulcerative Colitis, ulcerative colitis surgery | 31 Comments »