vent
#183611 - 06/05/05 07:46 AM
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Kristin940
Reged: 05/04/05
Posts: 104
Loc: Massachusetts
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Hi everyone!
I am having a really hard time, as I know everyone has been through this and can relate. I am not certain that I have IBS. One doctor did diagnosis with me with, and I do respond fairly well to Zelnorm but I think, given that other structural problems have cropped up in tests (e.g., fallen pelvic floor, retrocele, and now problems with my rectal muscles moving waste away from body). But, givethat I have dealt wtih anorexia for 7-8 years of my life, the doctors also thought that I had chronic C due to slow transit. I have had numerous colonoscopies, defogram, BE, anorectal manometry so that have ruled out Crohn's and colitis, etc. But I found some relief, from bloating and gas, with Heather's diet but, just last week, my stomach started exploding again on me...I tend to A with D, given that evereything "seeps" around the impacted stool. So I tried the "Break the Cycle Diet" again as I did have some success with it last time I tried it, and NOTHING is working. I was having saltines, white toast, white rice, applesauce, and plain organic veggie broth. Obv I am drinking the herbal teas and water, too! I can barely even eat these foods anymore due to the naseau, and my stomach bloating is INCREDIBLE (try, I gained 9 pounds last night since eating just saltine crackers, some white bread, and the teas! I went off the Zelnorm for a day or two to try to "kick start my body," but even the doctors upped my dosage to 6 mg 3x/day as my C is pretty severe. I just am at the point of not knowing anymore what to do---it's ridiculous and, having had anorexia, this is hte cruelest joke to play with my bulging tummy and my inability to even eat. I know all of you have had such a terrible time struggling, too, and I would welcomoe any feedback/words of wisdom. Thanks so much for listening! I do really appreciate it!!!!!!
Kristen
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Re: vent
#183614 - 06/05/05 08:31 AM
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beacon1961
Reged: 02/28/05
Posts: 62
Loc: Marlton, NJ
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Hi Kristen,
I really don't know what to tell you-I am at a loss, other than I hope with time things get better. I do feel for you-You poor thing. It sounds like you are really suffering.
I can relate to being anorexic and now having to deal with the bloat etc. It is a cruel thing-and it makes me mentally a mess. Even when I know it is the bloating I freak over the weight that is usually gone again when the bloat goes down.
Hang in there and know that we are here. Huge HUGS!!!
Mary
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It only takes a few committed people to change the world!
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Re: vent
#183618 - 06/05/05 08:42 AM
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SCgirl
Reged: 05/24/05
Posts: 148
Loc: Charleston SC
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I am so sorry for what you are going through. I have never dealt with an eating disorder but I do have a severe case of IBS-C. Over the past year or so I have found nothing that helps. I dont have "trigger foods" I have come to the conclusion that my stomach just does what it feels like doing and I cant really control it, its just something I have to deal with. I know what you mean by the bloating, I think that is the worse part. I went shopping yesterday and I couldnt buy any pants because I was so bloated, I think that sometimes if I go for a long period of time without going to the bathroom I am probably about 10 lbs heavier! Very embarrasing!! Anyway, I am here if you need to talk about the C I deal with it everday. Hope you feel better soon. 
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This is an exert from an email I sent to Jessica, another former anorexic!
"I know what you mean about loving food and just wanting to eat normally without having to think about it. To just sit down to a normal size meal, eat it without discomfort, and then go on with the rest of your day. First we could not eat because of Anorexia, and now we still can't eat because of this stupid "stuffed" feeling and IBS. Life is so ironic. What a bad joke this is. The tables somehow got turned around on us. 
I'm right there with you in the "this stinks and isn't
fair" group. It isn't fair. And I hate trying to
exist with all this. Food is everywhere and tied to every
event. And we are ostracized from life because of this. Totally sucks".
I have an extremely difficult time with the bloat issue. I was used to a concave tummy and pants falling off of me. Now don't get me wrong, I would never ever want that again. Totally ugly and unhealthy. But the bloat plays major mind games with me and it is very difficult to put food into my mouth when I see this 6 month pregnant belly looking out at me!  I have skinny arms and legs and a big old belly. I keep trying to tell myself it is bloat and not fat. And I do not restrict in spite of it because I know I need the energy, strenght, and nutrition I can only get from food. But man, head games!
I also am not responding well to the diet. I also have other things going on, such as delayed gastric emptying and a non-functioning gallbladder. I worry that the eating disorder past has done irreversable damage and that this is why H's diet is not working for me.
No one seems to know the long term effects of eating disorders, unfortunately. No doctor has been able to tell me if this is all caused by my past eating disorder or if it is IBS or what. One GI told me I have IBS and a second told me I didn't. 
Given all your tests and the results, have your doctors given you any suggestions or ideas on how to deal with your structural and slow transit problems that did show up? Now that they know you have all this, can't they fix them or tell you how to manage them??? It seems like there is something they should be able to do to manage them or repair any structural damage. And I know they have Therapists who do Pelvic Floor exercises usuing biofeedback to help strengthen the muscles. I looked into thi myself, but I never had a defogram to see if it would even help me.
I think you need to continue eating despite the bloat and gas. As you know, NOT eating enough can trigger gas and bloat too. I know it's hard to eat when you feel so gassy and "fat" from bloat. But if you ate, it wouldn't seem to make it any worse, and may, in fact, help???
Keep posting. We have lots to learn from each other. I am C too and have many of your same problems/issues.
Hugs, Kristin!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi Augie, Beacon, and SCgirl!
Thanks so much for your kind words and support. Honestly, I hate to sound so hopeless and "blah" because everyone is suffering, and with chronic conditions you do have to accept/learn to manage the symptoms! But, it is honestly (as you know) horrible to deal with this on top of recovering from an eating disorder and, truthfully, it has caused me to take many backward steps in my recovery. As you mentioned, I don't really have any "trigger" foods-it seems once my belly gets aggravated from whatever-it-may-be, ANYTHING in my mouth including water/teas are problematic. Yes, I am going to try biofeedback for the pelvic floor troubles, the retrocele, and also my rectal muscles which are basically flacid (and blocking stool from leaving my tooshie!!!). However, it's frustrating bec there is one PT in the area that does biofeedback and she is booked until August!!!!!!! I Just got back from ER, as the swelling/pressure was so great, I culdnt even keep food/liquids down. They toook a another scan and found the impaction of stool again, so they prescribed miralax and also the Mag Citrate to clean out (hello, I just did the Mag Citrate beg of last week for my anorectal manometry!). Does this continually happen to others where it just builds up repeatedly?!
Well, thank you so much again for all your support! It is so much appreciated!!!! I hope that you are all doing ok!!!
Thanks,
Kristen
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I send you EMPATHY, i.e. I've been there--a twig and then BLOAT/mythical weight gain (when I say mythical, I mean the gain is actually just water, air, undisposed of wastes--bloat). Be kind, gentle and merciful with yourself. Sometimes, as a recovered anorectic with IBS-D, I feel outside of myself (dissociated) when a sudden faux pregnancy appears due to an attack. Heather's diet is a great blueprint or directive for managing attacks, symptoms. Would yoga help in strengthening your pelvic muscles, etc.?
It helps me tremendously. Just a flash suggestion. Know that you are not alone. There are many experienced individuals who participate in these discussions with insight, sensitivity, and humour. Hugs!
Kate (Wind) IBS-D, pain prominent
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Oh, wow, honey, you are in a rough patch, aren't you? My goodness. I don't know what to tell you. It sounds like you're doing everything right. I went through a rough patch just a few weeks ago, and I felt nauseous no matter what I ate. Have you tried ginger tea? It's really helpful for nausea. Slice a piece of gingerroot the size of a quarter and steep in a mug of boiling water. You can also try chewing on a piece of crystallized ginger. You can probably get crystallized ginger in a specialty store or a bulk food place. Heather wouldn't recommend this, but I found flat ginger ale helpful. For bloating, fennel tea is best. If you can, break up a tablespoon of seeds a bit and steep in a mug of boiling water. It tastes like licorice (bleh!).
Other than that, walking can help, as can some yoga poses. Hit the Yoga icon at the LEFT hand side of this page. There's tons of poses that you can try to try to get rid of excess gas. I find them helpful.
I know it's hard when you're nauseous, but don't let your stomach get totally empty. It's just worse. It's really hard, I know, but keep nibbling on things constantly throughout the day. Several small meals is much better than a few big meals.
Let us know how you're doing. Hugs, Alicia.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Re: vent
#183677 - 06/05/05 12:59 PM
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Kristin940
Reged: 05/04/05
Posts: 104
Loc: Massachusetts
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Hi Alicia and Kate,
Thanks so much for your help and advice!! Yes, the fennel tea has helped tremendously, as well as the ginger tea. I literally must have 6 cups/day!!! Now, though, the belly is enor!!!!!
I know my emotional state is further feeding into my tummy troubles! I do exercise daily,and that is usch a piece of mental sanity!!!! All o your support and kindness is as well.
Again, thank SOOOO much!!!!!!
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How could I forget to mention GINGER tea?!!! Yes, it really eases the nausea! I know this isn't on the "diet" per say, but FLAT gingerale does wonders--I usually open a bottle a day ahead. Also, FLAT club soda (I like Schweppes as it is just carbonated water and sodium bicarbonate. Most other brands have different ingredients. Just let it go flat the day before to get rid of the bubbles.) I feel nauseated just about every day and these two things are saving graces.
Also, using sea salt and organic no-chicken broth makes a huge difference.
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ty so much alicia & wind for the instructions on the above & other nausea & bloat tips. i've written them down.
kristen, i'm yet another who can relate to this cruel joke, this bloating re: (in my case) formally being WAY to thin. 80-90 lbs (105 tops) for 25 yrs, but now i'm weighing 145! and, at 5'3," it is SO hard to accept. crimeny, i even used to model for a local dept store. ditto the concave stomach memories vs. the current pregnant look.
being thru menopause and into my 50's has made me obsess much less on this, have less of my self-esteem tied to it, but it's still something that bothers me at times - like the infamous going to *attempt* to buy new pants. i'm now down to finding half-way stylish stretch capris/ jeans. never thought this would happen to me, especially as it never did to my mom, who had all the same dxes and struggles.
i'm one who never lost their period, and seem to have no lasting organic damage. but, who knows what's down the line?
anyway, i so hope you find some help/ solutions. btw, i've read alot tying ibs to anxiety and depression, but nothing citing an e.d as actually causative of ibs. (perhaps i'm wrong.) but, i know it certainly 'feels' that way. how could it feel otherwise?
edited to add, this is the order in which these came up... for me:
1) major depressive disorder w/ attendant anxiety - since childhood
2) ibs-c and/ or constipation - since childhood
3) eating disorder - anorexia - OR could have been 'just' the weight loss, sleep loss, etc. of the typical (vs. atypical) variety of mdd - since early 20's
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--------------------
 
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Kristen,
The short answer to your post about stool repeatedly building up is yes. Here is the long answer. I too suffer from extreme C. I had originally been diagnosed with the possibility of Crohn's diesease 10 years ago and they kept me on the meds becuse it seemed to help the symptoms I was having (severe weight loss, constant pain, very inflamed colon, bloody stool ocassionally). Since that time I have had many tests and it all culminated in July 2003 with a burst diverticuli, resulting in a temp colostomy, three weeks later I was back in surgery with a obstructed small intestine. Then they reversed the colostomy in Jan.05. Since that time the Dr's kept telling me fiber-eat more fiber, drink more water. Well I did that only to end up back in the hospital 4 times since Jan. 04 with impacted stool. Finally they did a transit test (Sitz Marker) and I have an extremely slow colon (it took a week for the first marker to make it into my rectum) So then they said fiber and Milk of Magnesia. Well let me tell you fiber just doesn't work for me. All it does is clog things up. I am on Zelnorm now and of course Heather's diet. I have noticed a huge improvement. I haven't given up the Milk of Magnesia yet but just started the Acacia. I used to be in pain at least a couple of times a week, but now on Heather's diet (and I guess the help of the Zelnorm) it is very rare that I am in such pain that I have to stop everything and go to bed.
I will also tell you that even though my husband and I walked almost everynight, I decided to join our local Curves place and I have really enjoyed that. I think the exercise not only helps move things through but it also helps with everyday stress.
well I could probably go on and on but I wanted to let you know you are not alone.
Jamie
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jblake???
#183930 - 06/06/05 10:21 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I noticed you first stated that fiber did not help you, but later you mentioned that you are starting Acacia. Is the fiber helping you now? What is different that you have decided to try fiber again when it didn't help you before?
I am asking because I have had problems with fiber in the past myself. I have delayed gastric emptying and like you, feel that the fiber "clogs me up" more than it helps. But I would like to try it again if you think it might be helping you, especially because Zelnorm does not work for me. Did a little in the beginning, but not now.
Also, how often do you take Milk of Magnesium? My doc told me it was not safe to take on an ongoing basis.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Kristen
#183933 - 06/06/05 10:33 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Isn't there some sort of surgical treatment that they could do to correct your retrocele or other anatomical problems?
Did they tell you if any of these current conditions are the result of your eating disorder? Did the anorexia cause this and is it permanent so that we will have this pain forever? Did you see this post Eating Disorders Was wondering if your doctors have given you any feedback on if the ED caused this and if there is any hope for some relief at any time? Or is this how life will be now from our past abusive?
Also, what supplements are you taking to help the C? Anything? The fiber supplement may be causing worse problems for you if you have weak muscles or a retrocele or other anatomical problems.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi Augie,
sorry for not replying sooner. i actually got pretty sick and was in er yesterday due to dehydration.
to answer your questions,i guess they could od surgery for the anatomical problems but biofeedback is more effective the doctors told me. what's more is that surgery often might replaced the muscle as it should be w/in the body, but does not help the chronic C troubles (which is really causing problems with my functioning).
I am taking fiber-im using benefiber as my supplement of choice. ive tried citrucel and physillium and didnt find them all that helpful in terms of gas/bloating. id ont notice that the fiber aggravates the system much, as i know it is essential to getting bulk into my stool and moving things out.
the doc did not mention causality. in fact, i am in the field myself and have found a definite association but causation in terms of eds and GI problems are still not clearly understood. in fact, he told me that hte mechanical/structural troubles could have existed since childbirth and may have contributed to my fullness at an earlier point than normal individuals. that being said, iti could have "fed in my anorexia" by giving me a false sense of fullness. But nothing is definitely causal at this point.
How are you feeling? Thanks again for all your thoughts and helpful advice!!!
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Check the ingredients, but unless you are using some special heathfood brand, I don't think regular ginger ale actually has any real ginger in it. I could be wrong.
--------------------
Amanda
I live in the Big Apple, but I don't eat the skin
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Maybe it has something to do with the ginger flavour and the flatness of it. I don't know, but it really works. That at flat club soda, especially Schweppes which is just carbonated water (which I let go flat a day ahead) and sodium bicarbonate and 75mg sodium/glass. Maybe it's the sodium? I don't know.
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