Reversal Feb. 20

For some weeks after surgery you’re likely to be better off walking than running. There are no long-term limitations to running. There are some strong opinions about lifting, and there are some reports of complications, but the large majority of J-pouchers who lift do so without incident. I’ve personally chosen lighter weights/more reps as a compromise, but I’m not a serious lifter. I exercise almost every day.

I was eating pepperoni pizza when I started reading your post, so that’s kind of funny. I even added extra pepperoni. Many (maybe most) J-pouchers eat whatever they like - I certainly do. Most of us have food superstitions, I think, and some of us have actual food sensitivities and intolerances. It’s always worth paying attention to how your body is functioning, and noticing connections to diet, but I’d also suggest guarding against assuming that a challenging day was caused by something specific in your diet. Some of us get anxious when (for example) we see spinach in the toilet bowl or have a watery BM, and others are more relaxed about these variations. The ideal stool for a J-poucher is soft rather than formed.

UC hit me last year like a bomb. Never had any major bowel complications. Shingles 2016, opioids 1½yrs, SIBO 2018. I went vegan for a bit & got better. I ate anything. Heavy lifter, bodybuilder since 1985 (HS). I set lifting records in HS & college, played college football, etc. anyway, March 2023 I started bleeding rectally, in April I was in the hospital for UC, and in May I had an emergency complete Colectomy. Long story and many complications later, I had the take down in December. Surgeon was good with immediate light lifting and no abdominal work for 1 month post-surgery.

Last year was hell, as is this year, but it's better, more or less, to have my intestines back inside of me. My stoma would prolapse, so I had to be on my back most of the time. I'm finally lifting again and it's nice. It's only been a month and I've taken it slow, but things are coming along good. I'm 5'8" & 210# at ~10% bodyfat. I was 225# before I got sick. And went down to 160#. It was crazy. I'd never seen my bones. And I was crazy bony and looked like a cancer patient. I was dying.

I can't yet eat spicy, since it burns the inside my J-pouch and is really irritating/hurts. I am using psyllium husk with each meal and it's seems to help the anal tissue acid burn. Medications didn't help. I think the psyllium also helps with the spicy food. I used to eat jalapenos, habanero, ghost pepper and the most spicy of foods. Not anymore. I will hopefully get better and be able to eat them again. I'm taking it slow. But it seems that the psyllium helps, as does time, in beginning to eat "normally" again.

Right now I'm trying to learn how to eat properly & time things so that I can sleep at night. I've been waking up 6-8x at night which ruins life. But I'm on disability and have no life right now anyway. Trying to be positive with a desire to stay alive; it can be quite difficult at times. Returning to a normal life seems impossible right now. But reading on this site has given me some hope.

I slept awesome with the stoma & bag. The J-pouch is a completely different story. I'm trying to learn how the J-pouch feels so that I can sleep without waking up all the time.

Anyway, I was able to start working out a few weeks after surgery, along with eating basic solid foods. I'm just not into this long enough to hit it with the spicy foods I used to eat, at least not just yet. I wish you the best. It's definitely a journey. Good luck.

After my reversal it was about a month before I did anything passed walking/running. And even then it was mostly body weight type exercises. Didn’t do any ab stuff for about a year (which was more of a mental thing than anything else). Currently doing CrossFit 4 times a week and lifting heavy about 1 of those days.

Tinkeringbeardedman, now that I think of it, we make/eat pizza weekly. I've got 4 kids & pizza is almost a weekly thing. Pepperoni being the only pizza one of my son's will eat. But we have also purchased a local, really good pizza from the only place we'll order from: Very thick with tons on it. I don't remember having issues eating a few slices of the meat lovers.

My only issue is using loperamide/immodium correctly (timing-wise) in the evening, so that I can sleep better. My surgeon says not to use it, but waking up 6-8x at night isn't something that works for me. I've gone weeks with sporadic/crappy sleep, and it only leads to negativity, depression, and being a non functional person. I'm trying to be proactive, reading on this site and trying new things.

I have been documenting everything I eat and when I deficate; trying to figure out if there is a solid small intestine transit time. I've played with loperamide and took 2 before dinner, then another 2 a few hours later, before a small snack. I slept better than I have since the take down. Only woke up 3x. This makes me feel better especially when I want to sleep after a day with a hard workout.

As for workout/lifting, I have always had pretty amazingly strong and built legs. Leg press, squats, duck squats, lunges, dead lifts, DB roman dead lifts, etc. thick quads w/ hams to match. And the past month, although slow, I do not tend to let this J-pouch stop the leg routine. My surgeon has no issue with any exercises. I don't see any anatomical issue with a deep squat & a J-pouch. I squat in a super low position (ass to ground) every day/night (& have, more or less, this whole past year) to stretch & open the hips, spine, etc.

I don't know how heavy you lift, but before this intestinal issue, being in my 50's, I decreased my squat (up to 285# x10) & leg press (up to 4*45# per side) weight. Although I hang from a bar or from my ankles on an inversion table almost everyday, I have shrunk 1" due to my intervertebral disks getting 'crushed' over the years.

I've only hit squats a few times in the past 3 weeks and went up to 135-185#, deep, without issue. I've also found ab-work crazy important, for me, for stability in my lower back. Taking a year off from exercise/lifting, more or less, because I felt so horrible really sucked. But the caution to NOT use abs when I had the stoma, most of the year, has been debilitating.

My right-side lumbar spine will tighten and hurt crazy bad. I stretch hams throughout the day, and have started doing the same with different ab routines. The abdominal incision through my midsection and especially the scar/hole from the stoma tends to get really sore. I still do the work, making sure I'm doing things right, with the abs remaining tight and flat.

Yes, I think we will recover to something like we were before. We just need to be patient, be positive, and be smart & proactive. I thought that the actual J-pouch take down surgery would be my life-saving change...... And that my life would be so much better immediately after. I was wrong. It's been a slow learning process. Yes, life is better, but it's definitely been a struggle to find normalcy. Reading people's experiences here made a big change in my attitude & actions. the surgery wasn't "magic", changing my life to "happily ever after".

Just like everything else in life, we need to be smart, think things through, struggle & get back up if/when we fail to see improvement. Document what we are doing, Plan what appears to work best, Execute those plans & Change things as necessary. Lastly, Because I eat slightly differently now vs before, with limited snacking, I am leaner than I was, at least for now.

Nutrition is another subject I've been studying and researching. I'm a nutrition science major, worked in a genetics lab, had 1 year of med school, before leaving & becoming an electrical engineer. We definitely have had changes in our bodies that we need to account for. But that's another subject for another time.

@CJCowdwell thank you for the pointers and information! Have you been using protein powders?  If so what do you use? I have an organic plant based protein powder but haven’t touched it since the Ileostomy was put in place.

And I have been the same way with the abs with my stoma. I have always worked with my hands, worked on my own vehicles which requires lifting and lots of bending over, straining, etc. So I’m ready to have this reversal.

i definitely don’t expect a change right away, it’s going to take time for sure. But I want to be able to try foods again and not just stick to a strict diet forever. I miss sushi, pizza, hash brown casserole, etc.

I hope some things I've mentioned will help you. It's definitely been a long difficult road, this past year that is, for me. I'm glad I found this site, I just wish it was a few months earlier.

I eat everything you mentioned. Ramen, sushi, pizza, tuna casserole, etc. I'm just careful of spicy things right now. I'll slowly try them again and see how the pouch does.

As for the protein, I haven't been making my shakes like I used to, pre- take down. I'm gonna try this week. My normal plant based protein(s) are different flavored Orgain non-GMO plant based, from Costco.

When I had SIBO (~2018), after opioid use for shingles, I went vegan for a year or so, which helped. I then went plant-based, for a year or so. And am now whole-food based. I just really like the non-GMO Orgain proteins. I don't have (or didn't have) issues suggesting those. I also use Naked Glutamine & Naked Creatine. Pre- & Post- workout I like the non-GMO NutraBio products. I think they are vegan plant proteins. There's a non-stim pre-work out  & an intra & Post- workout powders. I feel they digest easier and quicker.

In the past, I was on Monjouro for high A1C (diabetes marker) ~6.1+. It lowered it a bit for me to ~5.9. My cardiologist also tried to put me on a statin to lower my ldl. After a lot of reading and studying, it appears that small oxidizable LDLs are the problem, not "LDL" itself. Those are usually created by snacking and sugars. All seed oils are bad, too. I now eat bacon & eggs every day, sourdough and grass fed butter, no seed oils or fried foods. Most everything is made at home.

Now, My A1C is lower than it ever was on medication. My cholesterol, LDL and all lipids for that matter, are better than when I was on a statin. My small LDLs have dropped significantly from a few years ago. It's hard to refute the results of my blood tests, when they are better than they have ever been. Avocado oil, cold pressed import olive oil, grass fed butter, etc. reduce sugars and seed oils. It's a challenge, but appears to be working.

My wife has been into nutrition, was a full ride heptathlete at USC, national competitor each year of HS and college and was at the Olympic trials in 1996. She was in the top 5 discuss throwers in the nation. She is awesome and is full on board with all of this. She makes most everything we eat as a family. We both shop organic/non-GMO and we teach the kids about everything. What heating oil for long periods of time does, byproducts made, and everything. They eat what we eat in the house, but makes their own choices outside. It's just nice when they come to us and point out how much arsenic or other poisons are in in-n-out fries, or other foods that they have been eating. That way they will learn on their own. Anyway.........

@CJCowdell this is all great information, thank you! I too have Orgain Non-GMO. Good stuff!

Hi there.  If you are still struggling at night, and want some advice from someone that has had her j pouch since 1996 and has overcome many obstacles to a new normal life, let me know.   I went from waking several times to one or no times.  Happy to chat.  All the best to you.

After many years of interupted sleep I started hearing about time restricted feeding/intermittent fasting. I can spend 8 hours in bed now as long as I don't eat for at least 5 hours before bedtime. Sometimes I make exceptions for special occasions knowing I'll have to accept the consequences.

Sorry for the long post. I cover eating times, immodium/lomotil & psyllium use, small bowel transit time, & iron deficiency.

@Deb C Thank you for that info (5hr pre- sleep). I will try this, but it's so difficult w/family dinner at 7-8pm. Some things my surgeon told me; (1) "eat your last meal at 6pm", & (2) do not use immodium/lomotil.

I'm ~3½ months post take-down (05Dec23) & struggle with waking 5-6x at night, regardless if I use any medication or not. Sometimes it's only 3-4x a night, but I still can't get a normal night of rest. The past few weeks I've been using lomotil 3x/d, but still have frequent and very watery stools all night long. I have been recording everything & trying to figure out this problem.

Do you or have you ever used immodium or lomotil to slow gut transit & increase water reabsorption? I was thinking it could delay total transit time to 9-10 hours, & let me sleep. But it's not been successful for me, to let me sleep.

I've found (for me) that 2 lomotil 3x/day (& even 3 immodium/d) is too much & I feel an uncomfortable "heavy" or "full" feeling in my lower abdomen. I've never been constipated but that "heavy/full gut" doesn't feel good. And I still have to wake up multiple times in the night.

Studying small intestine transit time has only produced more confusion. It seems everything I read indicates that a single meal, depending on the macronutrient ratios, will have different transit times. So a single meal may exit in 2-3 different bowl movements (bms) over several hours. And "generally", heavier fat-based meals will have a longer transit time.

Does anyone have experience with gut motility/transit time using psyllium husk? A few months ago, when I had incredible acid-burn pain of my "corn-hole", I started using 1Tbsp of psyllium w/water with each meal and it eradicated the pain & thickened my output. I've weaned off of using it every meal & only feel a slight burn of my anal tissues. The surgeon said my body (anus) would naturally get used to the acid and would stop burning. Or maybe the body learns to reabsorb the bile acid a little sooner in the ileum. I'm not sure if psyllium slows transit time or just helps bind the bile acids.

@TinkeringBeardedMan I now eat whatever I want, for the most part. I haven't gone back to my snacking of chips & habañero/ghost pepper hot sauce. But I generally eat whatever I want without issues. I generally don't snack anymore. Just eat a few meals a day with a post-workout quick digesting protein drink. And lifting has gone mostly back to normal.

Although I have been iron deficient & can't get my numbers back up naturally, regardless of what I eat or what supps I take. The hemotologist has me on an iron (Fe) infusion protocol. 90 minute IV infusion once a week for 5 weeks. I just had #3 yesterday & I think it's helping. I don't notice any lack of energy except when I'm in the gym. I get really tired with a hard workout, more so than I have ever felt before. My surgeon says that some people have a hard time absorbing Fe after the Colectomy/J-pouch procedures.

@TinkeringBeardedMan posted:

Hello everyone!

This is my first post on this page. A little about myself. I was diagnosed in high school in 2005 at the age of 15 with Ulcerative Colitis. At continuously suffered and had no true support from family since they didn’t understand and didn’t want to. Over the past 20 years I’ve been on multiple medications. Just last year around spring 2023, I noticed that the Entyvio I was on, my body I would assume became immune to it. At that point, we (my doctor and I), had exhausted all medical options. It was time for surgery in hopes of a better life.

On November 14, 2023, the first stage of J-Pouch began with the removal of my colon and a temporary ileostomy in place. The first day after surgery went okay. But the second day, I started having cold sweats and lots of pain in my stomach. That afternoon, I stood up with the help of a nurse and all I remember my last words being were, “I can’t see and I can’t hear”. I woke up and I was informed I had an emergency surgery. You see, what happened was, when the doctors were removing my colon, they nicked my small intestine with the burner tool they use for a clean cut (I don’t know what the tool is called 😒). It caused an infection, which then went into my blood system causing Sepsis. I was in the hospital for 2 weeks with multiple pain pills and antibiotics while I recovered enough for them to send me home. A little off topic but no one told me pain meds would cause vivid nightmares 😂.

This week I had my Fluoro Enema done and have the green light for the reversal on the 20th of this month. I’m so excited!! However, I have a few questions:

1. How long until I can start going to the gym again and lifting, running, etc?

2. I know that I’ll be on a soft diet for a bit and that I need to try foods slowly and small portions, but does anyone have success with Pepperoni or Salami? I’m a huge pepperoni and salami sandwich fan and same with pepperoni pizza.

3. Is a normal cheese/pepperoni pizza okay? Or do I have to limit the cheese and sauce and pepperoni?

4. Was anyone who suffered from UC or any other IBD for multiple years afraid to try foods because they still have the fear like they did with IBD? Because I do  

Any tips anyone wants to point would be greatly appreciated! I’m looking forward to a better life, as 20 years of UC took a lot of chances from me (Coast Guard, Law Enforcement, 911 Operator).

Thank you for reading!

Ryan

Hey Ryan,  apologies my reply is delayed as I haven’t been on here for a little bit.  Sounds like you received some pretty good responses!  I don’t have too much to add as far as the food goes, except that It will be a little trial and error to see how things work through your pouch.  I find I can have pepperoni as long as it’s not too spicy.. I can’t do spicy foods at all.. and always make sure you chew everything very well!  What caught my attention from your post was the comment about UC taking chances from you.  If I calculate correctly from your info, you’re about 34?.  I had my total colectomy in aug 2006 (33 yrs old), takedown in feb 2007.  I trained in martial arts since 17yrs old, and once felt healthy again, which was within a few months I began training again.  Also, followed a lifelong dream and began the process of becoming a police constable! I was hired in 2011 at the age of 37!  So just in case those career choices are still something you would like to go after, it’s totally achievable. . While I can’t say everything has been perfect with my j-pouch.. good days and bad days.. I’m still very much loving my job.  So just wanted to say… it’s never too late..! Cheers. Good luck..

Wendy