Getting very distressed
#191663 - 07/05/05 06:33 AM
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LtDanFan
Reged: 12/17/03
Posts: 588
Loc: Ohio
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I'm almost at the point where I would like to go to my Dr. and tell him I want a colostomy............The constant D and unGodly cramping is completely devistating. I've had two episodes that started around 11:30 pm and continued until 5 a.m. the next morning, I can't go to school or work after this and how do you explain IBS to your boss, no one understands. This happens even when I'm eating just my fiber and the safe stuff.........I am soooo frustrated, I don't have any clue what to eat anymore. Still can't get into see my GI guy until August. I hate this stupid illness. Sorry guys very frustrated and just venting a little, however I have investigated the colostomy.....
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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My mom's friend has IB-D pretty bad. She actually did go the colostomy route, after her doctor suggested it, to give her colon a rest.
While it is not the easiest to have a colostomy, it helped her tremendously. She feels much better now.
I'm sorry you are feeling so distressed. I am too. I wonder if a colostomy would help IBS-C?  I haven't gone for days.  I feel your frustrastration.
Anytime I hear someone say, oh, it's only IBS, I want to throttle them! If they only knew the toll it takes on your quality of life...there is no life when you are suffering as badly as we are suffering.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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What fibre are you on and at how much? What are you eating? What meds are you on?
I would never consider that route myself. However you may well want to check that this is IBS.
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I truly do understand the thoughts that some type of surgery has got to be better than the constant suffering. I had decided to go to our local surgeon to discuss what surgical options were available to me. BUT somehow I came across this website and after slow deliberate changes, (safe foods, meds, sfs, immodium, teas etc)things began to settle down. I don't mean instantly but the pain really let up fast. The D and spasms took longer and I had a noticeable difference when I began the Acacia and taking Immodium every day. After reading a gazillion posts around here I know that this will always be a back and forth state. It is awful when the "it's only IBS" gets thrown at you. Nobody can understand what it's like to be totally unpredictable from day to day with this problem. Please keep us informed how you are doing.
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Franny
IBS/D
Celiac
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Linz,
I'm on Citrucel and have been for 2 years, I take it faithfully, I eat Heather's diet faithfully, I do get my soluble and insoluble ratio correctly. I have followed her diet for almost 2 years now and have had IBS for like 20 years, I've had two colonoscopies. They bot confimred IBS diagnosis and where in my colon the problem is. In the past 15 years I have been on 4 different IBS meds, Bentyl, Donnatol, Levsin and finally Librax, which is what I'm on now and have been for probably 7 years. I also take Prevacid for my GERD and have for years. When I'm not constantly cramping and having D, I always try to make sure I get my fiber grams in per day, I drink no caffeine, milk products, no pop, stopped chewing gum, everything that is Heather's top 10 no no's...........This is what is so frustrating, the longest I have ever gone with out an attack in the past year and a half is 1 month............Hope that answers some of your questions......... 
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
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I was almost at that point, too, a year ago. A colostomy sounds horrible, but when I though it might be the only thing that could let me lead something even approaching a normal life, I was willing to consider it. I got lucky because I found this Website by chance (I did a Google search on "beano + IBS") and Heather's approach has worked wonders for me.
It may be that Heather's guidelines simply are not working for you, but before you go the colostomy route, here are some thoughts and alternative approaches:
Would you consider posting what you are eating and supplementing for a few days to see if anyone on the Board can spot a possible problem area? I'm not trying to say you're doing things wrong, but sometimes the people here can see something you may have missed.
You could try a different SFS. I'm IBS-D - before starting Heather's diet I was about as D as it gets many days - and I take acacia. I also take a lot of it - 8 teaspoons which is 20 grams of SF per day.
You could consider an anti-depressant, not for depression, but for IBS. I took Elavil which worked well for me for a while. I eventually had to go off it because I neeed to keep increasing the dosage to have it keep working and the side effects caught up with me. However, even those few months of relief were wonderful (this was before I found this Website) and it's possible Elavil or another AD would work for you long-term.
You could try the Breaking The Cycle diet for a few days and see if your D quiets down. If so, then maybe Heather's approach can work for you with some tweaking, like maybe less IF.
Have you tried the hypno program? I haven't, but I know some people swear by it.
Check out this post for an interesting regimen. You mention you've tried Bentyl and I don't know how you were taking it, but if LauraSue's use of it is not what you were doing, perhaps it would work for you. Also, note LauraSue's use of Immodium - you don't mention trying that and maybe using is it as a preventative measure would help.
I hope some of this helps. I know that if you're at the end of your rope, gathering yourself up to try new things can seem overwhelming, but a colostomy is a big step, so I hope you can find another way.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Have you tried any other SFSs?
Also, PPIs like Prevacid can cause D, so you might want to consider changing to another one to see if it helps.
What about eating IF? Have you tried cutting it out completely for a while? I needed to do that to stabilise - back then any IF would trigger off the D again.
Have you not tried Immodium?
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Cheryl,
I understand how you feel! Sometimes you feel so horrible and hopeless, you want to resort to drastic measures. Please know you're not alone and we'll help you get through this difficult period.
Could the Citrucel be causing you problems now? Are you using the orange or clear mix? I tried the orange mix years ago, after having a difficult time with Metamucil; unfortunately, the Citrucel wasn't any better. Two ingredients in Citrucel orange, citric acid and potassium citrate (which is also in the clear mix), can actually cause diarrhea. I would say that, along with the PPI, could be keeping you from becoming stable.
And how about stress? I think one of my biggest non-food triggers is anxiety and stress. Is anxiety a problem for you too? Are you doing anything to manage the stress?
Like Linz, I also had to cut out IF completely when I was first stabilizing in addition to taking Immodium as a preventative. I'm able to tolerate Benefiber (guar gum) and inulin (found in my Luna bars!) as my SFS. Another thing I did was try to keep my eating habits and sleeping habits on schedule and I tried not to stop eating at least two hours before bedtime; although this didn't stop the D, I started to go to the bathroom at regular times, usually in the morning. This might help you from having attacks during the night.
Well, I hope this helps and that you start feeling better soon!
Take care.
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I went the colostomy route for 6 months but not by choice. I had that surgery due to severe C that wouldn't respond to anything else. It was a shock, although they told me what to expect and I thought anything had to be better than the pain. But it took me weeks to recover, not so much from the surgery but from the mental shock of what all a colostomy entailed. Actually I don't know how long it would have taken me to recover mentally because three weeks after the semi-emergency surgery for the C, I was back in the hospital for a second surgery due to adhesions of the small intestine to the large intestine from the first surgery (which I understand is not all that uncommon). That was such a shock that the colostomy actually took a back seat to trying to recover from two major surgeries in a month.
I then had several hospitalizations after the colostomy reversal (due to C) and at times would think maybe I should just have a permanent colostomy, but then I would remember the inconvenience of it all and that lead me to research and finding this website.
I know my problem is C and yours is D but I would really be cautious of making that decision. If you want more information about what life with a colostomy is like you can email me. My insurance did not cover the supplies even though the surgery was a medical neccesity, and the supplies are expensive.
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I sooo appreciate all the advice and I'd love to be able to share what I'm eating daily, I guess my biggest problem, aside from the D, is the Un Godly, labor pain, cramping that goes on for hours before I even go blast....I could live with D, if I didn't have all that miserable cramping.
The D/cramping episodes started on July 1, I don't remember what I ate Friday, but Saturday, I had Half a bluberry sour dough bagel, from Panera, they are IBS safe, I take the citrucel caplets, 4 in the am, and 4 pm, I drink at least 4 bottle waters a day along with peppermint tea, that is the only two things I drink, since I had such a severe episode Friday, into Saturday, I had sourdough pretzels and applesauce, (natural) for lunch, and for dinner I had a half a sub, from subway, honey/oat bread, turkey, pickles, shredded carrots and seedless cucumbers on it, along with lays baked potatoe chips, regular. Up until recently I had taken 3 librax a day I "gradually" (over a period of a year) lowered the dosage since the 3 a day did not help and Heather's diet seemed to be working and I was on 20mg prozac and birth control pills. About 5 months ago, I quit the BCPillls and about a month ago I stopped the prozac. Since December of last year my IBS had been doing pretty well, I quit taking the librax 3x a day and just take it at bedtime, since 90% of my episodes are at bedtime. I try not to eat 2 hrs before bed, but I do drink peppermint tea just before going to bed. I thought I had remembered a couple years ago, before heather's diet and this board, I ate whatever, I knew salads killed me, but I started taking the prozac and asked the drug rep when he came in the office if it had any indications for IBS, he said no, they can't market it for that, but a lot of people that take it had some definite relief, I think I quit it because I was getting heavy? Don't remember. Sorry. Saturday I had a 11:30 p.m. to 5 a.m. cramping, with the heating pad and no rest until I could finally go to the bathroom, it "usually" starts out normal and a little firm, but always ends up like water, after about the 4th BM. After that episode, in the am I had my fiber, half a bagel (Panera) bagels are all made from sour dough and are IBS safe, (I don't get the ones with a lot of fat in them). I had rice and pasta noodles, with spray butter, which is not really spray butter, no fat, no dairy, stuff, and a slice of sour dough bread. D again during the night. Yesterday, I had a banana for breakfast, sourdough pretzel, lunch and an apple, dinner was baked tostitos with soy cheese, and baked beans. I never over eat, I can't. With these latest episodes I have started back to 2 librax a day, and I am very hesitant with the imodium because I'm afraid if I take it the cramping with prolong because I can't get the BM out, since the cramping lasts so long, and I usually have to go at least twice before it's full blown D. Any other suggestions would be so grateful!!! What is the trick with imodium, i'm afriad I'll have the cramping longer if I'm Constipated................ I forgot to mention, I've taken Prevacid for years, so I don't think that is a problem, Nexium/prilosec gave me diarrhea and the only fiber I used to take was Fibercon,,,,,,,,,not good!!!! Sorry friends, I also have noticed in the past week that 2 or 3 times my BM"S have had that awful sulfa smell, but have not eatin any gassy veggies, what causes that smell..........
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IBS-D, extreme pain and cramping - GERD - lactose/dairy intolerant, OCD, Fibromyalgia
DX: w/ Multiple Sclerosis 3/10
I can do all things through Christ who strenghtens me. Phil 4:13
Edited by cjc (07/05/05 02:32 PM)
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