Venting and whining a little

I had the exact same history as you, including LGD, difficulty with the temporary ileostomy, and multiple blockages post surgery. The blockages were all due to post surgical inflammation and scar tissue. My surgeons in 4 bowel surgeries told me that my bowels really swell up when they are cut. I am a sweller and bleeder. 

Anyway here is the deal: multiple blockages right after Takedown but none since late 1992 or 1993. It's not clear to me if your issue is inflammation or swelling which is really two different things. I was dealing with swelling and inflammation from the surgery itself. Which all died down but took months to do so. In your case it's not clear if this is post surgical swelling or a disease process. The difference between the two is significant.

good luck!

Thanks, CTBarrister. The doctor just said "inflammation," not swelling, but both doctors (another surgeon from my surgeon's practice was on call over the weekend) mentioned the possibility of it just being normal post-surgical inflammation first. So, I'm hoping that's all it is. The second surgery was only a little more than 2 weeks ago.

Thanks for posting. It's so great to hear about folks who have had your success long-term!

JM,

It took way longer than 2 weeks for the swelling from my surgery to settle down. And more recently I had thyroid cancer surgery and the swelling and scar from that surgery took a couple of months to go down and a year later now you can barely even see it.

I should mention that I am strictured where my ileum meets the J Pouch inlet. This stricture is due to inflammation over time and scar tissue. My GI Doctor has been aggressive in treating what we now believe is Crohn's Disease and I have gotten careful and smart with my diet so I have been able to limit and control that situation. Having lived with the J pouch for 24 years now I believe I may have lost it if I had not made serious dietary adjustments with limiting carb and sugar intake. It makes a difference. Anyway life is good and I hope for 24 more years from my J Pouch. Let's keep it going and I will try.

Good luck.

Sorry you're having so many issues!! We all do or did and it sucks!! I had a small bowel obstruction due to adhesions right after the reversal. That pain was the worst pain I've ever ever had including the births of my children, pancreatitis breast cancer (just to name a few) so I was admitted to the hospital and they scoped me (ouch) which actually broke up the adhesions. Then the docs inserted an NG TUBE UP MY NOSE along with TPN for about 3 weeks. The tube was removed on or around the 4th day. My hospital stay was about a month. But that cocktail helped. I lost a tremendous amount of weight... Down to 83 lbs. 

What can I say besides I'm a very lucky lady because UC sucked the life outa me and I was diagnosed with stage 3c Colon cancer. 

I had no option. The beginning is tough because your body has to get use to the new plumbing and I can finally say that my quality of life is getting better each and everyday!  I still have to go to the bathroom A LOT but no pain and I'm very careful with my diet. I'm also cancer free��������  today. I have a wonderful medical team, a wonderful husband and fabulous family and friends that haven't left my side. I have noooo problem asking for help because my energy level is coming back but will never be the same as it was before. And that's ok because I'm here and I'm surrounded by so much love that I have no choice but to fight back and not give in.  If I'm tired I rest and do NOT push. I find that when I try to push thru it ... I'm in bed for 2 days after that. ( I did have 34 nodes that were positive for CC.) You're very lucky that you didn't have to endure the chemo cocktail (Folfox) while going thru the Jpouch shit!!!!! It was hell on earth! Being a single dad ... I can't even imagine! 

Talk to your medical team and never give up! Even if it means switching. I live in Philly and most of my treatment was at The Hospital Of University of Pennsylvania

Good Luck and complain or vent and or scream as much as you want! This site is amazing and so are the people!!! Tons of info and support are given here❤️ 

Hello, Jersey Mike. I am sorry you are having so many worries. My takedown in April was also complicated because of heavy adhesions. I could not sit down because any weight on my bottom would cause shooting pains up into my abdomen, as if the j pouch was screaming at me not to sit down! That calmed down after 10 days or so. My surgeon said the area inside was swollen and sore from all the handling during takedown. The healing process took approximately seven weeks before I felt close to normal and could walk without pain somewhere. Try not to worry. Take deep cleansing breaths, send oxygen into your blood.

When you are able to eat and drink again, perhaps taking the spice turmeric will help your inflammation. Turmeric is what gives curry its colour. It's available at health food stores in capsules and the turmeric should ideally contain black pepper to enable it to absorb into your body efficiently. Or you can buy a fresh turmeric root from grocery stores to grate directly onto food (scrambled eggs, vegetables, potatoes, smoothies) with a bit of fresh black pepper, and hopefully the pepper does not irritate.

If you are taking antibiotics, try to take a probiotic every day in capsule or yogurt form to replace the good bacteria. I take a capsule of 50 billion daily. I used to eat kimchee as my probiotic before my surgery, but for now I shy away from the crispy, spicy, delicious cabbage that makes up the kimchee. Maybe next year. I wish you and your son every good wish for your recovery so you can spend time together. If he is old enough to understand what is happening, he might be frightened for you but he will see you getting stronger one day at a time.

Janiep and Winterberry - thanks so much for the insight and kind words. Maybe I was just hoping for it all to be a little too easy. I told my doctors that I had a cruise scheduled for Labor Day with my takedown on July 21 and they were all, "Sure, you'll be good to go," so I think I was expecting it to be a bit of a cake walk. 

Janiep - congratulations on how well you're doing and being a cancer survivor. I lost my wife to colon cancer (it actually recurred in her abdomen before she died, but was primary colon cancer, which was already stage 4, having spread to her liver when they caught). It was the biggest shock in the world. After years of her being my rock when I was dealing with UC complications, for her to be diagnosed with colon cancer just blew us all away. So, I saw first-hand how rough the treatment was. She was hospitalized several times during chemo and went on TPN because she was basically malnourished from all the inflammation and pain her stomach. It was hard to see, and I can't imagine how hard it was for her or you. 

Winterberry -  glad to hear you're doing better and thanks for the advice. My doctor did give me a script for VSLDS3 which I had been taking for about a week. I haven't been on it now, obviously, since I'm NPO. 

Hang in there Mike!!!! I'm so very sorry that you had to lose your wife to this horrific disease!! That is so sad! I can't even imagine going thru all this without my husband by my side. He is my rock!! Your wife will see you thru this! She is now your guardian Angel looking out for you from above❤️ 

You can do this and I swear it will get easier. It just takes time. Lean on those you love. Btw I do take VSL probiotics which is a prescription and has helped me tremendously!! Ask your GI about it 

keep us posted!!! 

When you are ready to eat solid food again, go slowly, like a baby. My surgeon said expand my diet but chew everything carefully to avoid sending things to the j pouch that is hard or rough or partially digested. Do whatever you can to help your j pouch, don't make it work hard, whether it's chewing 20 times, or liquefying food into a soup or smoothie in the beginning. Be careful about blockage on your cruise -- where food will be available 24/7!!!  Choose carefully the cruise food, remember overloading on sugar and carbs can affect the pouch bacteria. While you are learning the new plumbing, your pouch is learning to leave behind its old life of being a nutrient absorbing small intestine to its new life of being a colon! That's a big job. Go gentle with yourself and your pouch. It does get better day by day. 

I had my second follow-up CT scan yesterday and saw my doctor. There was "significant" improvement and I can eat again! Two weeks ago today was my last meal. That was rough. I'm taking it easy. I had some scrambled eggs for dinner and then a hot pretzel (the kind that are frozen and you heat them in the microwave or toaster oven) as a snack. I feel so much better already. I'm also off the IV antibiotics and took my probiotics again. The diarrhea has been pretty bad on all the antibiotics with no food, so hopefully it slows up. Fingers crossed that the worst is behind me, but going ahead cautiously. 

Thanks again for all the input/advice!