Since I got home from the hospital, my stoma has been somewhat retracted. I have a loop ileostomy now, so I have two pieces of my intestine forming my stoma instead of one. The working part retracted quite a bit, but went to the point of near disappearance a couple of days ago. Because the stoma was flush with the skin and my skin was sort of concave around the stoma, the output started to continually break through the flange (and by continually, I mean it broke twice at work and a total of 8 times in 24 hours). It was an incredibly frustrating and painful day (my skin is a disaster). I used ever flange I had, and had to go to the medical supply store at 8am in desperation to find out what to do. Thankfully, a woman there called Coloplast (I usually wear their products) and got some advice on which products would work.

I thought it might be useful for anyone who has this happen in the future to know that the basic idea of what to do is to use a convex flange and a belt to help keep it in place. It’s working for me now and the stoma is starting to come back out again, it seems. Also, a retracted stoma is not dangerous or any type of emergency. I was pretty panicked when it first happened since I’d never even heard of it happening but my surgeon wasn’t concerned at all. He did arrange for me to meet with a stoma nurse but he didn’t bother changing the appointment that I had already had for week later, which I actually found reassuring (especially since my first concern was that it was going to completely disappear back inside my body somehow!).

These posts might also help out:

• February 10, 2010 -- Making Ostomys HOT! (2)
• June 10, 2009 -- The First Surgery: One Month Later (9)
• March 3, 2010 -- University Research on Jpouch Social Support Sites (7)
• February 25, 2010 -- Commenter with Questions (8)

I started to respond to Brevin’s question about fibre supplements, but the comment was getting too long, so I figured I’d make a new post about it. I just started using fibre supplements during my last hospital stay. I hadn’t needed them before but after the incident with the blockages, I was losing way too much fluid (I had to stay in the hospital on IV), so I had to take fibre supplements to slow things down.

On a bit of an educational note, if you’re looking at different brands and options, I think the key is that you need a “bulking agent”. The psyllium in Metamucil is a bulking agent, as are a few synthetic fibres (like inulin in Benefibre). In general, the synthetic fibres need smaller doses to achieve the same results. I also looked into more food-like options, such as cereals with psyllium fibre. The problem is, while the nutritional information tells you how much fibre the cereal provides, it doesn’t tell you how much psyllium fibre in particular you will get from a serving. My understanding is that this matters – not all fibres do the same thing. The bulking agents actually absorb water, but other fibres don’t. There is a useful comparison chart found at the University of Iowa Hospital website (http://www.uihealthcare.com/topics/digestivesystem/constipation.html), although I think it is likely more useful in the USA, since the brands and doses are not necessarily the same in Canada.

Below I outline my opinions on fibre supplements. Remember that these opinions have been formed in the last week or so, and therefore I don’t have the most extensive experience, although I have thought about fibre supplements a lot lately since they were linked to my hospital release and I plan to head back to work on Monday. Also, as a researcher, it bothers me that I changed more than one variable at a time (I started using Benefibre and changed the times I took the supplements almost at the same time – which factor is most important?). However, these are just my experiences and I believe there are lots of varied personal experiences (otherwise, the doctors wouldn’t have to try things out and wait and see what happens, there would be hard and fast rules about what works).

- Metamucil orange flavoured supplement (the only type of Metamucil the hospital carries) is totally disgusting. It gets very thick and you can’t disguise the taste. Also, for anyone who has had to take Pico-Salax before a surgery or colonoscopy, the taste gave me flashbacks.
- Metamucil “wafers” (read “cookies”) actually aren’t bad. However, if you have to take the dose I was recommended (the equivalent of 2 packs of liquid 3 times a day), you have to eat 9 cookies a day, which equals 9 cookies or 540 calories of cookies. That is a lot of calories to add to your diet if you need to be concerned about those things (the resident was concerned in the long-term, though I need to gain about 10lbs right now). Also, you get sick of the cookies quickly. They do fit into my purse nicely and serve as a snack, which is positive.
- Metamucil also comes in caplet form. There was some concern about their ability to dissolve quickly enough in my short intestinal tract, but there were no problems with the dissolution. However, I had a lot of pills to take (8 pills 3 times a day) which is daunting.
- The Metamucil caused a lot of discomfort and cramping, although it did achieve the desired effect of slowing down my digestive tract (enough to get released from the hospital).
- Benefibre is so, so, so much easier to take. I have only been taking it for a couple of days, but it seems to be working well (maybe not as well as the Metamucil, but it is also not causing the cramps that Metamucil did). I have only dissolved it in liquids so far (though I’m going to try baking it into muffins later!), and it definitely dissolves better in warm liquids (the results with hot tea were much better than with cold water). In the tea, you really can’t tell the difference. In the cold water, it didn’t all dissolve, but it was still infinitely better than the Metamucil liquid. I only have to take 2 teaspoons 3 times a day, which dissolves easily in a regular cup of tea.
- I have been playing with the dosage times over the past few days. In the hospital, they gave me the Metamucil with meals. I think the logic is that it needs to mix with food. However, that was resulting in me taking all the supplements between about 8am and 6pm and then none for 14 hours. This was causing unequal results (lots of liquid during the evening and almost none during the night and day). I have since started taking the supplements at breakfast, late afternoon and bedtime and it seems to be better.

These posts might also help out:

• January 9, 2009 -- My Friend Fiber (1)
• January 26, 2009 -- Just a quick note about pills (1)
• January 10, 2009 -- Suggestions for Carers (Things I found helpful from my partner) (5)
• January 6, 2009 -- Learn From Experience: Easily Find The Right Medication (0)

Yesterday was the Crohn’s and Colitis Foundation’s Heel-n-Wheel-a-thon (the Canadian national organization) and my original goal a few months ago was to run it. I recruited a number of friends and colleagues to participate with me and I was quite excited about the event. After being hospitalized, my goal was to be out in time to watch. Eventually, the goal was downgraded to getting an approved temporary absence from the hospital so I could attend and, happily, I got one! The event itself was really fun, with free food and lots of activities for children (two of my nephews attended and had a blast). My colleagues went ahead and made “Jenelle’s Power Pack” t-shirts (they said “Run, Colon, Run on the front) and raised almost $2,300 which was really great. Even my boss came out and walked the race with his wife. I felt very touched and supported by the whole event, and that at least something positive was coming out of my being sick again. Next year, my goal is to run it!

These posts might also help out:

• February 13, 2010 -- Take a walk in my shoes (59)
• February 8, 2010 -- A little insight on my insides. (12)
• November 29, 2009 -- Jpouch Life Now iPhone Friendly! (1)
• July 3, 2009 -- Dave Barry’s Insight into the Colonoscopy (2)

These posts might also help out:

• August 11, 2009 -- Pure Citrus – Life saver (1)
• February 5, 2009 -- Love & A J-Pouch…And Crohn’s… (5)
• January 24, 2009 -- Devastating news…. (5)
• July 3, 2008 -- Sex and Intimacy (0)

Since my last surgery wasn’t done laproscopically, this one wasn’t done either. After the first surgery, my incision got infected, and it had to be re-opened. It then healed over several months with a packed dressing, resulting in an indentation and a lot of scar tissue. As the surgeon was opening the same incision again this time, I asked him to excise the scar tissue, which he did. He also said that if it got infected this time and had to be re-opened, he would refer me to a plastic surgeon, which made me happy.

I had high hopes to get everything done during the 2nd surgery, but it was not to be. My surgeon later told me that after opening the incision, he almost just closed it back up and left things as they were. He couldn’t even find what was left of my large intestine. His best guess is that the remaining portion was not completely sealed and it created some sort of suction that moved my uterus and ovaries over and entangled them with the intestine. He was not willing to relocate the reproductive organs himself, as it’s not his area of specialty and was concerned about future pregnancies. My partner and I are 95% sure we don’t want children, so this was really not a bit concern for us, but he didn’t know that, and it’s nice to keep the option open. We’re still relatively young (27) and I guess you never know what will happen later. Thankfully, a gynecologic surgeon was nearby, and got pulled in to do that part of the surgery. There was also a hernia and muscle deterioration. The surgery ended up taking 8 hours and the surgeon was concerned that it was too much of a trauma on my body to complete the process. So, my j-pouch has been created and is ready to go, but I have a loop ileostomy. I also have about 40 staples down my mid-line and a small hole where the drain was after surgery. Having the drain removed was definitely the worst part – I will definitely ask for more pain meds before removal if they do that next time. It took maybe 5-10 seconds, but it was surprisingly uncomfortable.

The staples and the rod that is in the loop ileostomy come out tomorrow. I’m told that the removal of the staples isn’t that bad, just like a little prick for each one. I’m looking forward to having the rod removed, as I’m uncomfortable changing the flange with that present. The ileostomy will then go back to being basically as it was before, although it’s a bit bigger than the old one, of course. All in all, I’m not feeling too bad. I’ve been off the pain meds since Saturday and feel pretty good, other than fatigue, which is expected. The surgeon estimated 2 months off, but that seems like too long to me. I think the recovery is easier since I’m not also getting used to using the j-pouch (there’s the upside!).

These posts might also help out:

• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• February 6, 2009 -- Week In Review (0)
• January 30, 2009 -- Week in Review (0)
• January 28, 2009 -- Meet My Hernia (2)

These posts might also help out:

• September 8, 2009 -- Colitis by Numbers: Days Since Module Tracks Flares, Tapers, and more (1)
• July 22, 2009 -- Jpouch Life is on Twitter (0)
• March 12, 2009 -- Camera: From the Colon to Eye Socket (1)
• February 6, 2009 -- Week In Review (0)

But when I started taking it, it made me feel better and I had almost no side-effects. I had some difficulty sleeping and I didn’t feel full as quickly (my satiation point seemed to disappear somewhat) but that’s it. When I was in the hospital, I was on ridiculously high amounts and it really didn’t effect me much. I was concerned because it looked like I would be taking it once a year or so for about a month, but the physician told me that taking it that infrequently probably didn’t have much effect long-term.

I’m not saying that Prednisone is pleasant and I know that some people have absolutely awful experiences with it. I just want to point out that it can make you feel a lot better and if medically it makes sense for you to try it, know that it may not be as awful as you anticipate.

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (8)
• November 10, 2009 -- Just Dance! (8)
• July 15, 2009 -- Don’t Ask, Don’t Tell (12)
• February 13, 2010 -- Take a walk in my shoes (59)

1. Help with food. I found the diet after surgery to be extremely restrictive. Since I generally ate very well prior to surgery, meaning lots of whole grains, fruits and vegetables, I found it very difficult to stick to the low-residue diet I was prescribed. In addition, I was told to consume as much protein as possible, not what someone who isn’t a big fan of meat wants to hear. My partner spent a lot of time planning meals and snacks, grocery shopping, and cooking, which made a huge difference.

2. Letting people know about my “situation” in advance. I found it important to prep people before we went to someone’s house or out to some social activity for a couple of reasons. I looked very sick initially, and a little warning saved all the awful “What happened to you?!” reactions that just reminded and reinforced how sick I looked. In addition, if we were going to someone’s house to eat (particularly if it was for more than one meal, such as staying for a weekend), prepping about the diet requirements was important. I disliked telling people about my complicated requirements, but it was easier for someone else to do it for me.

3. Setting up a reward system for bad UC/Ileostomy days. Problems with the ileostomy leaking (the adhesive coming of and the wafer losing it’s seal) is incredible frustrating and I had it happen to me quite a few times. It happens less now, although it still happens occasionally. My partner was always great about comforting me afterwards. We are both very busy, but when that happens (after I take a shower and get everything in order) we watch TV together and take the night off from work and chores. It has come to be a reward that balances out the awfulness of a blow-out.

4. Patient reassurance. Many times I have felt extremely overwhelmed by the situation and my partner has always been willing to patiently reassure me that things will get better and I can handle whatever comes my way. This is also true for how I feel about how I look, which has also been a huge deal for me (though truly I think the hair bothers me more than the ileostomy).

5. Entertainment. In those long, long days of recovery, my partner put lots of time into finding me things to occupy my time, such as books to read and TV and movies to watch. It made the recovery period so much better.

These posts might also help out:

• June 14, 2009 -- Fibre Supplements (7)
• February 6, 2009 -- Week In Review (0)
• January 26, 2009 -- Just a quick note about pills (1)
• January 19, 2009 -- Care Pages (4)

For those of you who have had takedown surgery, how will I be feeling the day before surgery? I’m assuming I’ll be on a liquid diet but I haven’t gotten all the presurgery info yet (I have a pre-admitting appointment on January 19th).

These posts might also help out:

• January 4, 2009 -- Planning (5)

Planning

I am in the planning phases of the second surgery so I thought I’d share a little bit about what’s going on.

Most of my life is currently revolving around getting my PhD proposal completed before I have my surgery. Everyone is being very helpful in supporting this process. I feel it will be much easier for me to recover if I have that under my belt.

I have pre-op testing on Jan. 19 and surgery is scheduled for Feb.10 (I was unable to get it moved back). Unless an urgent case, such as a cancer patient, comes in, I will be going for my second surgery. The surgeon is going to try to do it in one surgery but it will be two more if it doesn’t go “perfectly”, according to him. I will be in the hospital for about 5-10 days and 2 months for recovery afterward. If I need a third surgery, it will take place 4 months after this one.

I am really trying to exert control this time, perhaps because last time was such a surprise and I felt like I had no control. I am doing lots of planning — getting school and work things in order, getting things to read/watch/listen to while I’m recovering, thinking about what I want to bring to the hospital, planning food that I will want when I get home, organizing visitors so that I have a people visiting me a different times (I have a few people that are coming in from out of town to visit). I find the planning part does make me feel better about it. I am also trying to be realistic about how difficult it will be — actually, I’m likely overestimating it to be on the safe side. I just try to tell myself that of course it will be difficult and at times I will feel very overwhelmed but it will get better. It has to be less difficult than last time and I got through that, so I can get through this one. I am also very excited to move past this chapter in my life although I hope I can try to remember how lucky I am once I have some distance from this whole experience. Things could have always been much worse.

These posts might also help out:

• April 5, 2010 -- Home from Surgery #1 (1)
• March 27, 2010 -- Colston Thomas Mills (5)
• February 19, 2010 -- Blood, Poop, and Tears (2)
• February 13, 2010 -- Take a walk in my shoes (59)