# Don't know how much longer I can take this, feeling very discouraged



## AMcCall (Oct 3, 2000)

I used to be predominantly D, which I thought was just HORRIBLE, and although it was DEFINITELY no picnic, I'm having a much harder time with this horrible C I'm having.  Here's what I'm struggling with (and if anyone else has this basic problem, could you PLEASE post some suggestions?? I am just plain DEPRESSED with the way things are going, and if I don't get some help with it soon, I'm going to go CRAZY







!!) I go for sometimes as long as 2 weeks without being able to use the bathroom. Then, when I finally give in and take a softener to try and get things moving, I get D for a day, and then it's back to C again the day after. I've taken laxatives in the past, which definitely WORK for me, but the pain they bring me is unreal. I can sit in the bathroom and cry for hours from the cramps. It is so bad that I am very fearful of taking laxatives anymore. (I have Ulcertive Colitis, and I'm not sure if that makes things worse or not, but it is absolutely HORRIBLE pain...) Even when the softeners work and I'm able to go, I never feel NEARLY completely emptied out. And it's always right back to C the next day. I am so sick of this. I can't handle it anymore. I am afraid to even eat because it's like nothing is coming out







!! That is so scary!! What happens to all that food??!!?? I can't even go to the doctor about this, because my husband just went on a new health insurance plan which won't cover me for anything related to my UC for the first year, and the year isn't up until next August. THAT IS NOT FAIR!! Basically, the only thing I NEED insurance for is my UC, I never go to the doctor for anything else. And now I have to sit here and suffer day in and day out, because they refuse to cover me. So I'm just stuck I guess. I don't know what to do.Don't think I have ever felt so discouraged before... Please, somebody help!!


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## Guest (Nov 2, 2001)

>I am so sick of this. I can't handle it anymore.Yes, you can. Trust me, I know it hurts. I've been there biting down on a rolled up wash cloth to fight back the pain and then having a brief period of comfort only to have it call start up again, but everytime it eventually goes away and within days it's just a memory.One thing I do is just get truly hardcore for 2 weeks. I eat the blandest most boring diet possible, and if my family doesn't like it, they can cook for themselves. I try to maintain consistant sleep pattern, spend each morning taking a mile walk before work, and take a long weekend that is work and stress free! On that weekend I don't allow myself to worry about work nor do I allow work to worry about me. Now, don't get me wrong - that is NOT the way I want to live my life (well except for the vactaion part). I like junk food, staying up late, and sloth, but for two weeks I tough it out and then I'm good for a few more months of eating the foods that I know I shouldn't until something ticks off another bout. I kind of think of it as purging my system of the bad things....to make way for a fretch batch.As for the doctor, if you got the money to just pay him than go. Don't suffer to save the money, it's stupid. What price tag do you put on pain that's so sever it causes you to cry and question whether you can take it or not? Better be your childs last dollar or something nearly as desparate. If you can spend money on getting well, then what really is the point of it?


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## AMcCall (Oct 3, 2000)

Thank you for the advice, Click. I've been eating really blah foods for the last few days in hopes that maybe eventually my system will get back to normal. But only being able to use the restroom once every 2 weeks or so is just very frustrating. It's extremely uncomfortable, but I know I don't have to tell anyone here that. I just don't know how people live with this long term, it's horrible. As far as paying for the doctor out-of-pocket, I know you're right, but we struggle just to make it from week to week, so there's rarely anything even LEFT to pay the doctor, that's why the insurance was so helpful. We could just pay the Co-Pay, and then when they billed us for whatever insurance didn't cover, we'd have had enough time to save and pay what we owed. (Does that even make sense??) Without insurance, it's almost impossible for me to go. We just plain don't have the money. That's embarrassing to say, but I know we can't be the only ones out there who live week to week. I'll keep up with the blah food idea, and try to get in some serious walking this weekend. I sure hope it helps.


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## linesse (Sep 18, 2000)

Oh sweetie,I'm so sorry you are suffering so. I am C-type and I can't even imagine how bad it must feel not to go for 2 whole weeks! Then, on top of that, UC! If it weren't for that I say just go for the laxatives, but I know that in UC, they aren't recommended.You know what kills me? Doctors all say that to have UC you must have diarrhea. Well, you are C and have UC! Diagnosis is a b&%!h! I don't know what to say... just we care!


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## Guest (Nov 2, 2001)

AmcCallOk hon its time to get your boxing gloves on!Here is my advice drink water a lot of it. If you can't stand water buy some crstal light drink mix it has only five calories and no sugar to hurt your tum tum. When I say a lot I mean at least a half gallon a day! Exercise this has been so key for me. It helps get stuff moving. Try at the very least a 30 minute walk a day.Magnesium start with 400mg a day with 100-125mg with each meal. Any drugstore carries it and its cheap.Digestive enzymes these help promote the good bacteria in your tummy.Fiber supplements and dietary fiber. Just make sure with the increase of fiber you drink lots of water or some kind of liquad!!!As far as the doc is concerned call your local hospital. Most have some sort of programs for families who have low income or special needs you may qualify. I hope this helps and i will say a prayer for you too.Renee


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## Gswanson (Aug 23, 2001)

Hi: Hope you're doing better today. I know all the other respondents mean well with their advice and it may help some, but you are like me with the IBS-C, stubborn, stubborn, stubborn. I go 10 days without anything and when it happens naturally, it's so minute that it may as well have not happened. Then I end up the hemmoroids in straining for that little bit of movement. I've drank so much water that I could float and still no relief. I've taken everything over the counter plus laxative-type things that the doctors have recommended. They're all laxatives and make me end up with diahreha and racing for the bath room or unable to go out because of the laxative effect. Like you, even with all of that, I still don't feel completely emptied after all the laxative-induced cramping and running. When I was in the study with Zelnorm, it was the only thing in 30 years of dealing with this disease that I felt "natural" relief. I had almost forgotten what it felt like to get a natural urge to go to the bathroom. So I for one am waiting with baited breath and praying for Zelnorm to be approved. I am 5'2" and petite (Size 6-8) and I walk for exercise and do other exercises, but none of the exercise resolves my constipation. If that were the solution, I'd build my own health club or gym to get relief. All the bland food or not-bland food just continues to back up in my system. I, too, like you wonder "where is this digested food going if it's not coming out". You have to believe that it's not good to have old digested food or bowel that won't move backed up and maybe causing toxins in your systems for weeks. Bran, fiber or whatever doesn't work for me. I too am sick of it and sometimes I just pray that I could have a normal movement like most people in this world, but then I say, well, at least it's not cancer and I can try to live with this. But the reality is that it's so debilitating. I was divorced for most of my adult like but remarried 3 years ago. My husband cannot believe anyone goes as long as I do without a movement (he goes every day). So when my system is so backed up that my sides and back and legs hurt and I have to take a harsh laxative, I just advise my hubby that I'll be in the bathroom a long time. When I was single I was glad that I didn't have to explain that to anyone (smile), but thankfully my husband is sympathetic and concerned. I use a glycerin suppository by Osco Drugs that in addition to the glycerin has something called stearate acid in it. The plain glycerin have not worked for me in years, but this particular brand with this added ingredient works only to get the bowel that has just stopped in the anal area and won't move out. So I am in the drugstores with my reading glasses on reading the labels of the suppositories. When that relief is so incomplete that I'm still hurting, I resort (after a month of only 1 or 2 BM's in 7 to 10 day periods), I resort to giving myself an enema. That works for relief, but then it seems to dry out my whole anal system and I am even more constipated after that because there seems to be no lubrication to pass even small amounts out naturally (after the big soapy water enema wash out). So you're not alone in your dilemma. But Zelnorm will resolve our problems once the FDA gets real. Stress (more than what I eat) seems to worsen my problems and being a legal secretary with lawyers hounding me day in and day out keeps me tense and keeps my problem aggrevated, but I must continue to work and live my life. I don't eat junk food so that's not the problem. I learned years ago that fast food (McDonalds, Burger King and anything else fast) just about kills me (pain, bloating, etc.) so I left that alone 20 years ago. But now even decent, expensive restaurant meals in addition to almost anything I eat bothers me eventually. I got an e-mail from a gentleman in France who logged on to the group and he asked if he could get Zelnorm mailed from Mexico. Oh, my good. If that were the case, I'd have a UPS truckload in front of my house, but luckily Zelnorm has now been approved in Czech country which he says is near France and he can probably get it there, but he was one of the few men who expereinced the severe problems that women with IBS-C experience, bloating, pain, constipation and gas. Anyway, keep the faith. I have had first-hand contact with the people at Novartis because Zelnorm was so successful for me, they wanted to use me in their early promotions when they thought they'd get approval in June, but even though that didn't happen, I still have first-hand knowledge about the positive benefits of Zelnorm after being in the trials for 3 months in Spring of 2000. I too am tired of being sluggist and tired and in pain because I haven't had a bowel movement and quite frankly, people at work don't take it seriously. When I tried to explain it to people, later on they'd see me with something with cheese on it at a party or something (which is not something I do often like eating cheeze or pizza), they'd make jokes like, don't eat too much of that . . . you know your problem will kick in" yuk yuk. Well, whether it's cheese or any other food, my problem kicks in so occasionally we all succomb to eating foods that aren't exactly the best thing for us because we're up a creek either way. Keep the faith because I'm certainly trying and just by using Zelnorm, I know what it can do and know that eventually the FDA will come through. The question is "can we just hold out until they do" without getting seriously ill. I have ended up in emergency rooms 2 or 3 times because of my system being backed up so badly. I totally sympathize with you and the depression of "why do I have to go through all of this (laxatives and pain) to do something that most people take for granted? But IBS-C is real and it's a disease, so we'll just keep doing the mini solutions to keep us barely going until Zelnorm is approved. I guarantee, it's worth waiting for!!


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## AMcCall (Oct 3, 2000)

Wow GSwanson....I thought I was the only one going for that long without a BM







!! Still no luck today. Just horrible pain, discomfort, and G, but no BM. You mentioned that you, on occasion, use enemas for relief, could I ask you a question or 2 about those?? How hard is it to give an enema to YOURSELF?? I'd rather not ask my husband for help if I can manage it on my own







!! I have had enemas before when I've had colonoscopies, but they were the kind where you have to hang a huge bag on the showerhead and someone has to help you administer it. I was just a little girl then, and my Mom helped me. I'm hoping that I'll be able to accomplish this by myself now that I'm 28, LOL







!! Also, how long do you have to hold the medicine in before you get the relief?? This Zelnorm sounds like a God send!! I wonder if it will be safe for people who struggle with Colitis?? I sure hope so!! I hope it gets here soon too. I can't see struggling with this problem until my husband's insurance decides to cover me NEXT YEAR. I will go stark-raving MAD by then







I'm already so grumpy that I can barely stand myself. I must drive my poor hubby up a wall







I'm quite a bear after about a week of this. Linesse, I've had UC since I was 10 years old, and I NEVER had C until just a couple of months ago!! That's why I am so afraid that I might have a blockage or something. I am literally frightened that my colon is going to rupture or something because I can't seem to pass any of this food. It is downright depressing!! In 18 years of UC, I've been mostly D until, like I said, the last 2 months







But I have heard of other folks with UC who get occasional C too!! What's weird is, when I'm finally able to go, I get lots of D and bleeding, just like I used to. So it's kinda weird. Feels like I'm riding a roller coaster (or should we call it a colon coaster







??) nowadays. Thanks so much for the advice all. I sure hope something will start working soon, I'm feeling pretty rough!!P.S. If you go to the hospital and it IS discovered that you have a blockage (I'm assuming they do a colonoscopy to discover something like that??), what can they do to fix that?? Do they have to do surgery?? I'm just curious about that...


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## plm123 (Sep 25, 2000)

AMcCall, I am predominantly C but have become C/D over the years. I would gladly take D over C myself most of the time.Aloe vera juice (mixed with gatorade) has helped my C without nasty side effects.I just wanted to address your insurance issue. If you had no lapse in coverage for over a year, you should most likely have no pre-existing exclusions. You may need to send proof of prior insurance coverage to your new insurance carrier and then they should cover you. When you leave an insurance carrier, the send you a "certification of prior coverage" certificate or a HIPPA certificate. If you send your new carrier that certificate, you should be fine unless you had a lapse in insurance of over 60 days. Then they are correct and you will not be covered.PPO plans are normally more difficult about the exclusions. HMOs have other issues but there is usually no pre-existing clauses. New insurance carriers are not usually very forthcoming about telling you they require this certificate. I have even had to remind my carrier that they needed to check my file because they rejected a valid claim. Sure enough I got a "whoops" and then the claim was paid. You really need to stay on top of them.I hope this helps you. Good luck.P.


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## AMcCall (Oct 3, 2000)

Well, I took some Milk Of Magnesia this morning, and that actually helped a little bit. I was so glad!! I still feel like I'm not all the way emptied out, but at least it's a start. How often have you all had to take Milk Of Magnesia?? If I needed to, could I take it once a week, or once every couple of weeks, to get things moving?? I don't ever want to become addicted to anything like that, but it's so miserable to just go days and days without any relief. I was pleasantly surprised that the M.O.M. didn't cause the severe cramping that I get with laxatives such as Ex-Lax or Dulcolax. This worked really well for me. Now if they could improve on the FLAVOR, it would be great, LOL







I got the mint flavor, which I thought would be okay, but I could barely keep it down. EWWWWWWWWWWWWWWWWWW







!!


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## webbsusa (Feb 1, 2001)

I can't take Dulcolax (Sp?) or any of the those types of laxatives, either. MOM is the only thing I can take. I'm a C/D type; C is much, much worse for me, but a bad bout of C will swing me into D, or vice-versa. If I take the harsh laxatives, I will have a terrible D attack and swing right back into C once the D runs its course. GRR!







Like you, I don't like to use laxatives very often at all--I'm so afraid of permanently messing up my bowels (this happened to my grandma, so I speak from the experience of watching her suffering). However, MOM is supposed to be very safe to use frequently. I know that some of the pregnant women on this board have said that their OB/GYNs told them they could use it every day of their pregnancy if the C was really bad. Just last week I was at the dr for bronchitis, and while I was there, I asked her about magnesium supplements. She said that would be a good idea, as that's the same ingredient in MOM, and when I asked if it was safe to use every day she said yes. MOM has no stimulants, and that makes a HUGE difference.Just to be super-safe, though, I would call your old doctor to make sure MOM is okay to take every day. If you just can't even call that dr., does one of your local hospitals have an ask-a-nurse hotline? The cities I have lived in have all had that type of program, and any nurse could advise you on how safe everyday use of MOM is.I can get horrible constipation, too, and really struggle with fissures and hemorrhoids. Here are my coping strategies; it's much easier for me to prevent problems than to try to fix them after.I take 2 citrucel tabelts every day; I take two stool softeners every night (these are safe to take as long as they just have docusate sodium, with NO added laxatives); I drink at least 64 oz of water every day; I limit my pizza intake to once a week (it is my favorite food!); I exercise; I eat lots of apples, salads, and high-fiber breakfast foods (cereals, granola bars, etc); since Jan I have cut back on fried foods, which seems to have helped with the IBS and my weight loss; and I no longer eat popcorn--results in C with terrible bloating and cramping, and if a kernel isn't digested all the way, it could cause a fissure when it is eventually eliminated (has happened before). These strategies have really helped me. This isn't to say I never have bad days; in September I went over a week without a BM due to some antibiotics I was on, and I just got completely straightened out from that about two weeks ago! But, things are much improved, and sometimes I actually feel almost normal--with the emphasis on almost.







Good luck, and hang in there.


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## Gswanson (Aug 23, 2001)

Glad the MOM gave you some relief but I've tried it and after a while it doesn't work for me or only gives incomplete relief. If I drank the whole bottle (or half of it) like one doctor once suggested, then it turns into a complete laxative with diahrrea. I understand your reluctance to have your hubby help you with an enema. Mine has offered (out of sympathy I guess for my plight), but somethings are strictly personal and I would be too embarrassed to let him help me with that. So I feel my red hot water bottle with soapy slightly warm water(ivory bar soap shaken up in a glass and then transferred to the bottle); I hang the bag from a towel rack in my bath room and lie on my side on the floor a couple towels folded towels. I breath out of my mouth (that way you can hold more of the water without feeling an irresistable urge to go). I try to lay there until the entire quart bag empties, but of course the water is giving me a strong urge to go. Once the bag is empty, I tighten my anal muscles to be able to stand (and mind you I am lying right next to the toliet) and I get up and immediately sit on the toliet. The water will whoosh down and with it bring the harder and impact pieces of bowel. You might feel that all the water has passed out, but then when you leave the toliet, you'll probably get another urge to go and more brown water and stool will come out. When I have had to go the emergency room it is because the gas and the constipation have me in such pain that I can hardly stand or walk. There is no blockage or surgery necessary, but I have had to get an enema in the emergency room or the doctors have x-rayed me to make sure it's not gallstones or a blockage and then just prescribed a laxative (like Milk of Mag). But who wants to end up in the emergency room so I try my self help stuff to keep my condition from that getting far again. So again, I'm waiting with baited breath for the approval of the Zelnorm because fruit, aloe vera, Citucel, exercise and none of that works for me. It'll work once or twice and then I'm back to where I was. And as far as being anxious to get covered on your husband's insurance, I have full insurance with a good company and good doctors at Northwestern Hospital, but my condition is at a stand still. I hate to disappoint you, but there's really nothing they can do for me, but continue to rule out gallstones or any other disease. There is nothing for the IBS (besides the Zelnorm). Doctors have given me prescription laxatives (syrups and granules) which essentially are the same as over-the-counter laxatives. I was prescribed Ducolax years ago in the 70's before it became over the counter and we all know how terrible that gripes one's stomach with pain. I've gotten better tried and true methods for some relief if not complete relief over this ibsgroup site than I have from 30 years of seeing doctors for this disease. So keep the faith and try to not be depressed since you know there are others out here who share your disappointment, pain and discomfort. You're only in your 20's and I'm 52. Hopefully, in the next few months or year there will be some relief for us. I'm sure the Zelnorm is probably safe for colitis because I was diagnosed with Spastic Colitis in 1978 and now I was told by the doctor running the Zelnorm study that anyone diagnosed with a spastic colon in earlier years REALLY HAS IBS (Irritable Bowel Syndrome). IBS seems to be the new name for a spastic colon or spastic colitis. They're probably one in the same, but I'm not a doctor so I'm just going by what he told me and since I was diagnosed with that colitis term in the 70's, I know first-hand that my condition of IBS is the same as it was in the 70's. Stay positive and we're all praying for relief.


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## Guest (Nov 23, 2001)

Hi Everyone,I can totally sympathize with all of you. I have had chronic constipation for as long as I can remember - 34 now! I seem to be able to find solutions however they only work shorterm. I'm an Australian living in Singapore, so I'm not sure if you have some of the options that I use available to you. Prune & Senna Tablets used to be the only option that I had as laxatives almost made me pass out, they are a gentle option, however I don't use these any more as I am concerned about the Senna ingredient. I tried the "Fit for Life" diet for about six months and this seemed to help for some months, and then all of a sudden it stopped working - even though I stuck to the regime - I don't even remember my stress levels increasing?I had some success with Aromadigest which is a natural french product, however once again worked for a month & then stopped working? The other option is Kordels Quick Cleanse - Australia product I think. It's a two week course of natural products and provides a good rinse and there bowel clear & intesinal clear can be used continually. Hope this information helps someone, I totally relate to how uncomfortable it can be!!


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## silver (Dec 21, 1999)

I'm a C type as well and I cant imagine going that long without a movement. I eat yams/sweet potatoes and it really helps. Works every time. I know it sounds weird but they are high in fiber and taste good with chicken. I also find boilled cabbage works but yams are the best. I dont like oatmeal and find that it binds me more anyway. Try them and see if it helps. Hope you find some relief.


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## frightenangel (Mar 6, 2001)

Man, you think not going for 2 weeks is bad try 2 months. I've had problems with constipation since I was born. My mom tried everything and I still don't know what to do. It still takes me weeks to go, but sometimes even when I do go I know I'm not getting everything out because it,s only a little pebble. I'm not taking anything right now , but that's because everytime I tried something it made me feel ill and I got diaria really bad.


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## Guest (Dec 8, 2001)

Well first let me just say i'm new to this group thing...... I've suffered with IBS/Colitis for years I think since 94 /95.... I get really sick it give me a lot of gas build up and heartburn not to mention the pain on my left side... I was mostly a D but recently I'm becoming a C with bleeding....... I've gone to the dr for the scopes all he's ever found was a couple of polyps over the last three years.......But until recent I'm becoming more scared I'm now getting pains on the right side (almost like it's my gallbladder) not to mention the C is worse then ever I drink tons of water I try to eat fiber (but to much of that kills my stomach)....Everytime I try and go to the bathroom I have to strain It feels like it wants to come out but something at the end of the tunnel is stopping it (even to pass gas is a mission).....I'm really frighten something is wrong with me but also suffering from panic attacks doesn't make it better...... I go to the dr he gives me more stuff to try but can't take because my stomach is very senitive to medicines... I was hoping there was a light at the end of the tunnel but reading these replys was very very depressing...... My husband really doesn't understand what I go through he thinks I'm just streesed but in reality I'm very depressed and panic stricken I'm on 36 and If I can't handle this now imaigne when I get older.....All I want is to wake up one day and say I feel great...and beable to have a few drinks at my christmas party and not feel like I'm going to die.......I would like to thank you for taking the time to listen to me and I wish everyone all the best It kinder felt good to talk about it ......I just hope all the symptoms I'm having are related to this and are nothing new I could never get any straight answers out of the dr as to what are the symptoms.


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