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Long time no post...

LambiepieLambiepieMember
Hi all, I've been off this board for quite some time. I wish I could say it's because I've been doing spectacularly but, the truth is, I've been suffering for the past four months or so. I suspect it was precipitated by the stress of an ailing father-in-law and his passing in May. I've been on some combo of Cipro and Flagyl, or one at a time, for the two and a half years since my takedown. Every time I try to go off, I get severe gas, cramping and urgency. I'm on VSL and Lexapro, which I began taking during my last attempt to get off the antibiotics, and I don't think the Lexapro is doing anything, including treating my depression from chronic symptoms. I know I need to arrive at my own decision regarding my future but I'm reaching out to those who truly understand how difficult this journey can be. When is enough enough and time to go back to the ileostomy bag? I never really had any major issues with mine other than occasional leaks (my fault, I reused the clip too many times and it lost it's "clippiness") and some skin irritation from the loop ileo. I'm just so tired of feeling tense and preoccupied every day from the constant rectal pain and urgency. I feel as if I can't truly connect with those and that around me because I'm thinking, "When he stops talking, I'm going to make a run for the bathroom." In that sense, the ileo was such a relief and it's that relief that I can't get out of my mind lately. Any feedback would be most appreciated. I haven't forgotten about you all; I've just taken a break from a few things. P.S. I just saw a nutritionist two days ago. She had some good ideas about protein, digestion and weight gain. I had just gone off the Flagyl the day before that, so it's probably the lack of Flagyl and not diet that's causing my symptoms.
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C chiromancerMember
quote:
When is enough enough and time to go back to the ileostomy bag?


This is highly individual question. For me it was seeing my life contracting and being pouch /bathroom centered. I lasted about 20 months and then had it disconnected which didnt work well due to secretions from the abandoned pouch. 6 months of that was enough and I had it excised. I am quite happy with the end ileo. If you make the decision to go to an end ileo I would recomend getting the pouch excised. This is a tricky operation so you need a surgeon with experience with the procedure.
One thing you might check is to make sure you dont have C Dif
Lynne2Lynne2Member
Completely agree with chiromancer about it being an individual decision and to have yourself checked for c-Dif. I also put out a post asking how a person knows when enough is enough, but can't find it, probably because it was too long ago. I'm sure there are other similar posts on here that you can find by searching. I encourage you to read the suggestions and then turn off the computer and really reflect more on how you truly feel. There is no right or wrong answer other than an emergency type situation or when its crystal clear it would be best for your health.

For me, it came down to a desire for increased health (especially no medication) and more freedom/control in my life. Ater 15 years of chronic pouchitis, I did not want that j-pouch festering in my body a minute longer than I needed to, so I made sure to have it removed at the same time as my ileo surgery.

Going perm ileo is a big change and there are certainly body image adjustments that you need to be prepared for. Even though I knew exactly what I was getting into, I was really grossed out by the bag at first. I am still, after two months post-surgery, figuring out my appliance, clothing, dinner/nighttime routine, etc.

I also want to emphasize the importance of finding an excellent surgeon. Do your research, interview potential surgeons, and make sure you are in the best hands possible. I had an extraordinary surgeon in SF without whom I am sure my outcome and recovery would have been much worse. Here are some questions to consider including in your list:http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/1797054916?r=1797054916#1797054916

Best wishes to you as you make this decision. If you look inside your heart, you will know what you want your next step to be.
Last edited by Lynne2
J JillMMember
When I felt that I was living my life around my pouch is when I decided to go to the ileo. That was after 3 1/2 years. Have never once regretted going back to the ileo. Pouch came out in 2003, have since had two babies. I live my life on my own terms and never think about bowel issues. Don't hesitate to ask questions if I can help!
LambiepieLambiepieMember
You guys are great, thank you so much for your honest responses. I've been confused because I've had times of great success with my pouch and some really bad periods, too. It seems those great periods are waning and, therefore, my current crisis. I will say that my nutritionist was VERY helpful and I am responding to a new, varied diet. I will ALSO say that stress has a major effect on my pouch as well as my migraines. Do you all notice that with yourselves? Vacation last week - felt great. Back home and dealing with a needy sister with mental health problems and BAM! Symptoms back even with diet the same......
I know I need to look within and listen to my instincts, as some of you have said, but I do want to say that I so value your taking the time for feedback and support. Thank you!
LambiepieLambiepieMember
This nutritionist has a lot of experience with j-pouches. She has me eating more protein i.e. hummus, even though I can't have whole chick peas and peanut butter, although I can't have nuts. I'm eating more eggs and staying away from whole wheat and anything with seeds. I can have any melon, apples, pears, peaches without skin, but no berries oranges or grapefruit. I can eat broccoli (within reason), zucchini and butter/bibb lettuce and arugula, but no brussel sprouts, cabbage, cucumber, other lettuces, garlic, onions and absolutely no hard vegetables. I'm drinking lactaid instead of almond milk so I can get more protein. I do well on Greek yogurt but ice cream or frozen yogurt gives me pain. She gave me nine pages of suggestions and met with me once to fine tune the plan. Instead of feeling restricted as one can certainly feel on a diet, this plan actually has me feeling free to eat so much more than I was before and I already put on two pounds and have so much less gas and pain. I'm hoping the results last and that I can eventually get off the Flagyl and anti-spasmodic.
skn69skn69Member
Lamb,
I am so sorry that you are not off living the good life but going through pouch hell...
For some reason your nutritionist's diet seems anti-intuitive to me (I am not a nutritionist!)... But back in the early days pre and post pouch I studied nutrition (my mom, an RN, specialised in it in her last yrs)...sports and exercise, I used to be a coach...My surgeon used to consult with me on pouch diets and we came up with some interesting stuff...Chickpeas and bean in no matter what form cause gas, so does milk, even lackaid...eggs are also culprits for gas so I don't get it...but if it is working for you, why not.
Our go-diet for miserable pouches was always protiens, pure and simple. Chicken, fish, meat, seafood etc with very little of anything else...berries and concentrated fruits were good (high density fruits like bananas)but put into a blender and not whole...nut butters good (protiens)...no cheeses, or yoghurts (no diary whatsoever)..and certainly no glutens for the duration...some green veggies in a pureed form (no cabbage family)...Basically 6 tiny protien meals a day and a few fruit snacks in between.
If your diet works for you, fabulous, if it doesn't, try this and see how you do...
Hoping that you get some relief from your symptoms and so sorry for your father-in-law
Sharon
It worked well to calm down the pouch

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