sad tales: women with ibs-c page twenty-two
The tale of...Paige (2 January 2011)
I was diagnosed with IBS and GERD five years ago and have lived with these terrible conditions ever since. Recently my IBS has gotten to the point where I have to force myself to eat and even then I'm nauseous and crampy for hours afterwards. I've lost almost 11 pounds in the last two weeks, which is a ton for me as I've always been thin and a bit underweight.
This disease is running my life and no matter how many pills I take or doctors I see, nothing seems to help. Some days I just don't want to get out of bed and suffer through another day in pain. I've already missed a ton of school this year.
My family tries to be supportive, but as I'm sure many of you know, it's impossible to sympathize with IBS pain unless you've gone through it yourself. My parents are convinced that if I eat to regain my appetite and 'keep a positive attitude', all of my problems will go away. Don't you all wish it was that easy? My condition is tearing my family apart, especially my poor father, who already has enough problems of his own.
I count my blessings that I found this website when I did. Coming home today I was convinced that I would have to suffer through this alone for the rest of my life, and now I know that I am not alone in my pain and the conflict it brings to my life. Let's hope that some day, some doctor will find a cure to end all of our pain.
E-mail Paige: [email protected]
The tale of...Christina (July 2011)
The horror and hell of bowel problems, cystitis or endometriosis. I'm envious of the world around me because they can carry on as normal. I know they have a better life than me and they don't even know it. I don't know what I have. Every attack is different but painful nevertheless...though one thing is for sure, I would crave diarrhea more than constipation.
My amitriptyline is not working although I'm only on 20mg - this gives me constipation, no pain relief and worst of all drowsiness. I'm starting my third and final year of university tomorrow and I'm really not into it. I live at home and commute and I have eight-hour days; I'm anxious about my pains and being away from home. Nobody understands. I wouldn't want anybody else to have what I have - but some days I grumble and wish I could hand it over to someone nasty; like some bullies from school or some juvenile delinquents who don't know how lucky they are!
Doctors are useless: it took four years for them to decide to give me a colonoscopy. I've had every test, all with negative results. IBS is a term doctors use for 'I don't give a damn syndrome', they just don't want to look any further. They still need to confirm I don't have endometriosis, and for now they want me to have pain therapy - I'd rather know what's wrong!
Quality of life, well...I don't have a life. I hate going out. My social life has suffered and people take it personally (they think I have an issue with them - well I do, I don't have their carefree life). I can't sit down for long periods and I have to lie on my back in bed and not move; one false move is like me brushing against barbed wire - hell. I'm 21, and life stopped for me when I was 17/18. I just hope there's light on the horizon, that or death. There are days when I think I can cope, pain-free days, and then as soon as that's over the fear returns...is this the rest of my life?
E-mail Christina: [email protected]
The tale of...Margot (July 2011)
I have IBS with constipation. I have had this condition all my life, but I was diagnosed just recently. My condition is getting worse and worse. I pass gas and it's very embarrassing, but the worst part is the pain. When I am constipated I have severe abdominal pain that drives me crazy. I'm only 40 and I have a good job. Fortunately I can work, so far.
Four years ago I went back to school, and I'm thinking about a career change to make more money. I've been successful at school so far, though there are still four more years to go to complete my degree because I'm a part-time student. Now, after reading stories of people suffering from IBS, I'm scared it will ruin my life.
I know my condition is getting worse. I make sacrifices, such as avoiding many foods I like, but nothing helps. I take fiber and medications but it still gets worse. I take laxatives when I have a problem with constipation and that brings temporary relief. Sometimes abdominal pain strikes while I'm driving, and I drive 30 miles to work every day. I'm angry and scared. I don't know what I'm going to do if my IBS becomes so bad that I'm unable to work. It may destroy my life.
E-mail Margot: [email protected]
The tale of...Sharon (5 July 2011)
I have been suffering with IBS-constipation and a slow digestive system for many years. I first noticed that I had a digestive problem in the early 90s but continued living life like it didn't exist. Later, I started experiencing heartburn and just took over-the-counter remedies. But the biggest hit on my system was when I had three consecutive operations in three years: a hysterectomy, gallbladder removal and a stomach wrap. A few weeks after I had the hysterectomy, I would throw up half an hour after eating, sometimes to the point where my stomach was raw. My bowels were also not working properly.
I went to the doctor and was diagnosed with H. pylori bacteria which they treated with a strong antibiotic. This only added to the distress in my body. A few months went by without the heaving but then it started up again with much bloating and constipation. I went to a surgeon who ran tests on my gallbladder and suggested that I have it removed, so I did. The heaving started up again after several months and I went to another stomach doctor, who informed me that I had classic GERD. He suggested that I have a stomach wrap, which I did. The downside of the wrap is if you get nauseated you can't heave. The brain has to tell the stomach to go the other way, which really doesn't work for me.
The last two years have not been good. I suffer now with bloating, constipation, sensitive joints, rashes that appear and disappear, weight gain and extreme fatigue. Last year I did find some things that I know aggravate my system, eg: sugar, caffeine, spicy foods and milk. Sugary things build up more gas in my digestive system and also add to my fatigue. Sometimes the gas is so bad because of my stomach not emptying that I feel as though I am having a heart attack.
I'm very discouraged at this point with my doctors. I've paid out so much in co-pays with no definitive results. I'm not sure of what I can or cannot eat. Sometimes my stomach will turn sour and burn which gives me (or adds to) my hot flashes. My ears will turn beet red and my body feels like it is on fire. I'm thankful for this website. Maybe there is someone out there who has the same symptoms that I have. I know that there is a solution out there, for I am not the only one unique enough to have these symptoms all to myself.
E-mail Sharon: [email protected]
I have been wanting to talk about my experience as a child with IBS for a long time, but I have never been able to. So I have written my story here. It is sad, but I really wanted to put it out there just in case anyone is in a similar situation.
Nearly all of my earliest memories have to do with my bowel. They are invariably embarrassing and still fill me with shame and discomfort, so much so that I have never talked to anyone about them and cannot imagine doing so. When I tell people that I was bullied in school, they ask why, and I cannot give them an honest answer.
I remember locking myself in the toilet for entire lessons in Year One (age six). I remember a teacher having to wipe me in a bathroom after I soiled myself. I remember learning the term 'soiled myself' after a teacher spoke to me through a cubicle door during the before-school activities time I had to go to because my mom was also a teacher and so needed to drop me off early. I remember soiling myself with diarrhea time and time again at school and not knowing how to tell anyone, thinking that no-one would notice and I could just go home and sort myself out at the end of the day.
I remember children smelling the floor where I'd sat and thinking I'd farted. I don't know if they ever realized what had actually happened. I remember teachers taking me out of class to try to talk to me about it, but I don't remember ever telling them. I remember sitting on the toilet with severe diarrhea just before school started and my favorite teacher coming in and complaining about the smell. I called out to her, but I don't remember what happened next.
I would also get constipated, but then when I had a movement it would be so painful that I would try to hold it in instead, and I remember my mother telling me off because I would often try to hide the cramps by standing behind a chair or sofa and holding on. I remember my parents cleaning me up for years longer than they should have done because I would get so distraught and be in so much pain after a bout that I couldn't clean myself.
I remember the trauma of swimming, something which I loved doing, but the water would make me want to go to the bathroom. The same happened with baths, and I would often have accidents in the bath that I would try to hide. I remember having diarrhea at school earlier in the day and walking home later.
I didn't know anyone else who had ever had this sort of problem. I felt alone, a freak, almost to the point of feeling suicidal. It made me an easy target for bullying, because even though they didn't know the problem, they knew that I was vulnerable and unhappy.
My parents took me to doctors galore. They tried to make it into a game, with rewards if I could have a bowel movement. It might seem that my main problem was that I had diarrhea, but really I was always constipated. My parents would give me liquid Senokot, which tasted foul and upset my stomach enough to induce a movement. I didn't know that that was what they were doing, and so my life was full of uncertainty and horrible experiences that I didn't understand.
I remember sobbing to my dad not to give it to me when I was having a good time, since all it ever did was ruin everything, why couldn't he only give it to me when I was already miserable? I remember stomach cramps, straining so hard that I was sick, having movements so large that I tore and thought I had piles from the pain and itching as it healed.
I remember doctors wanting to do a rectal exam but not being able to because I was so constipated. I remember referring to 'the feeling' for the urgent need to go. My father told me that he had had similar problems as a child, which made me feel more embarrassed, and also angry that he was continuing to put me through this pain even though he must know what it was like!
Then I started manipulating people. I had permission in primary school to go and sit in the sick room toilet if I was having problems. I used to go and sit there to get out of whole lessons I didn't like, but it was incredibly boring. I became really introverted because I couldn't talk to anyone about it. It felt shameful, embarrassing and stupid. I remember my mother finding that I'd soiled myself at home and hadn't told her, and she was so angry that all I did was deny I knew. Then she got even angrier that I couldn't tell I'd done it. I always knew, but I didn't want to have to face the horrible thing I'd done.
My parents never explained what was wrong with me. They never explained what they were doing in giving me Senokot. They never realized the pain, confusion, shame, embarrassment and horror of what they put me through for all those years. My childhood was made a misery from badly-managed IBS.
My parents stopped giving me Senokot when I went to secondary school, and I lied to them whenever I could, saying that I was better and had no problems anymore. I think they were ashamed of what they'd done. It wasn't until I was 17 that I finally realized that having a movement once or twice a week was not normal and saw a doctor. He prescribed soluble fiber, which brought my regularity up to three or four times a week.
Now I manage the problem myself, to the extent that I can function practically normally. To anyone whose child might be showing signs of IBS, I urge you not to put them through what my parents put me through. It is a horrifying enough illness without that. Don't make them feel ashamed of what they have to deal with. Don't medicate them without telling them what will happen. Don't make them as miserable as I was.
E-mail Katherine: [email protected]
When I was three days old I had to go back to the hospital because I was constipated. I also had an upper and lower GI done. It turns out that since I was my mom's 'miracle baby' it came at a price. I have a plethora of digestive issues, including but not limited to: a spastic colon, spasmatic poloric stenosis, spastic illiocecal valve, severe food allergies and an extra 10-15ft of large intestine. Woo hoo!
Having had constipation my entire life I'd gotten used to it; for years nothing I took got me normal. I'd take a dump around once a week and that was normal for me. Once I started surfing seven days a week, several hours a day, I started going daily, which was nice. After an auto accident that left me with a broken back, my body went back to its old ways since I couldn't surf anymore, and being on some hardcore pain meds just made matters worse.
Now I'll evacuate my big old bowels once every 10 days. My dumps are big enough to name; it's like delivering a baby via my arse. Miralax, magnesium citrate, Ex-lax, stool softeners...none of them worked. My bowels are so impacted I was going to hit the ER a few days ago. Amazingly, I passed a softball the other day, just as I was ready to hit the clinic to get something done about the rest of the impaction.
I decided for to try some MOM. I bought a 26oz bottle today and drank a third of it. So far, nothing. Because of my birth defect, if I take a laxative or anything else that is instant or works in a few hours for normal people, it'll take a few days to work for me. I weighed myself just before I downed almost half of the bottle and I am actually surprised to feel a little gurgle going on. I normally drink several gallons of water per day and get more than three times the daily requirement of fiber, so if this shoots through me I am expecting to lose at least two to four pounds of poop in the next day or so.
E-mail Val: [email protected]
It all started when I was 18. I am now 23. I suffered from severe stomach problems and constipation and I was diagnosed with IBS. I was given omeprazole for the stomach pain, Movicol and Lactulose for the constipation, domperidone for the nausea and vomiting and Buscopan and mebeverine for the pain.
It gradually got worse. Bowel movements were not happening at all and I ended up being admitted to hospital on several occasions after the laxatives, enemas and suppositories had no effect. The first time I was admitted to a medical department I was discharged with senna, Lactulose and Movicol and an outpatient colonoscopy. The colonoscopy results were not good as the Movi prep did not clear my bowel. The second time I was admitted to general surgery I was kept in and given Klean Prep (medicine given prior to a colonoscopy) to take to make my bowels move. I was then discharged with Klean Prep to take once or twice weekly, along with glycerol suppositories.
After a time I was admitted again with the same problem and they had to enhance the amount of Klean Prep. I was admitted on several more occasions with the same complaint. In October 2012 I was admitted to hospital with severe right-sided abdominal pain which they thought was appendicitis. I was taken into theater which revealed a small bowel obstruction and adhesions.
Three months later I ended up back in hospital with the same type of pain, along with bleeding. I had an MRI scan of the small bowel which was clear. I was admitted several times over the next few months with severe bleeding. I was then refered to a bowel specialist. I had the balloon test and a short course of biofeedback. I was prescribed Movicol liquid, methycellulose, glycerol suppositories, Buscopan, a higher level of domperidone and a higher dose of bisacodyl.
I was seen again by general surgery due to rectal bleeding. I had an examination under anaesthetic and the surgeon thought I had an intusseception. I had an MRI, a pelvic floor scan which did not show an intussuception but did show pelvic floor weakness and this has to be discussed at a meeting. During this time I was working as a student and was off sick a lot. They did not understand. It's a lot for a youngster or in fact anyone to deal with. It brings great strain on my family.
I've had various types of anti-spasmodics that do not help with pain. I have severe pain every day. I don't see the possibility of returning to part-time work as I am so ill. I had a discussion with my GP last week and talked about 'quantity' and 'quality' of life and I emphasized that I have no quality of life. I am young and practically housebound.
There needs to be more awareness of the IBS sufferer. Instead of doctors looking at the symptoms they should look at the quality of life the person has. I am now suffering from anemia due to blood loss. I've even tried an anti-depressant for pain and that does no good nor does amitryptiline.
E-mail Nicola: [email protected]
My problem is that my intestine transit time is 45-50 days. Without laxatives and enemas I don't move anything. I have two sitz marker tests going on right now. The first capsule was taken 34 days ago. The second capsule was taken 21 days after the first capsule and 14 days from today.
I haven't passed more than three cups total of feces since taking the first capsule so the markers must still be inside of me, somewhere. All of the markers in both tests disappeared five days after taking the capsule. My doctor says I passed all the markers even though I didn't have one BM in the time during the tests. I think my problem is one of these two intestinal conditions, either chronic intestinal pseudo-obstruction or intestinal inertia. Plus to add to this I have a rectocele. I am trying to find a doctor who can help me.
E-mail Cindy: [email protected]
The tale of...Kerrie (5 December 2014)
I have had an irritable bowel for 20 years and I have tried so many things to fix the problem but nothing works. I live in Australia and I first read about SIBO about 15 years ago but I am having difficulty in proving this condition to any specialist. I have been tested positive for helicobacter, I am a am fructose/sorbitol/lactose malabsorber and methane producer and I have rheumatoid arthritis/scleroderma. I have spent a lot of money and time going to specialist appointments but most of them think that I have psychological issues not tummy issues.
I get so constipated and need a lot of water each day and find that if I don't drink enough I get even more constipated. This has become almost impossible socially. I am looking at the fodmaps diet but this is restricting. I do have good days but also many bad ones and as I have no sense of smell I cannot tell that I have a problem although everyone else can. This is very embarrassing and life-altering. I am desperate to find some answers.
My husband is getting tired of the same repeated issues and me spending money looking for an answer but not getting one. I don't feel supported in any way by family members and I have lost many friends which is even more difficult to accept. It's very hard to keep smiling and make out that everything is OK when it doesn't feel like that at all.
E-mail Kerrie: [email protected]
I just read Sophie's book Sophie's Story: My 20-Year Battle with IBS and cried a few times. I identified with so much of it. I have suffered from IBS-C since birth. My doctor always called it IBS and said there was no treatment. I was led to believe, until I found a GI, that there was nothing to do but suffer. Sophie said that when she has an attack, she is on the toilet for like an hour or two. I have poop days. I can literally endure weeks, two or three weeks with no poop at all...and then I have an attack and I am on the toilet all day writhing in pain, crying and sweating, shaking and sick.
I am unable to poop without help. Since finding my GI and getting tested for everything under the sun and ruling out all else, I officially got diagnosed with IBS-C and I have found some relief with Miralax every day. If I don't take it, I don't poop. Sophie also didn't think that anxiety was a big part of your triggers but it is for me. I can't poop for anything but if I get anxious about something, especially going on a trip or even if I'm worried about a problem, I have instant and explosive attacks of severe diarrhea, horrible cramping and unbearable pain. I still can't help those, but if I have been pooping with the Miralax, the attack might be a bit better.
I don't have a phobia of pooping in a public place, I figure if you can't poop and make all of our horrible noises in there, where can you? My gas has cleared out entire rooms and for that I always feel mortified but I can't help it. A lot of people think I'm rude and disgusting, but they think it can be controlled and don't understand that I don't have a few minutes of warning to leave the room...it just comes.
I am trying some medications with my GI. None have worked yet and it doesn't seem to matter what I eat, I could eat anything and have an attack or eat nothing and have one. Anti-anxiety meds have helped a bit but not enough. I am still on my healing journey but I so loved Sophie's Story. Most all of it is exactly how I feel.
E-mail Kathryn: mailto:[email protected]
Oh, where do I start? I don't even know if my IBS can fit into one category anymore. I've had IBS since I was eight, but I wasn't 'officially' diagnosed with it until I was 22. In the beginning I had IBS-D with severe cramping. It stayed that way for most of my life.
I've tried most of the medications out there and the best I had at one time was Zelnorm. Sadly, many of us did well on that medication and then it was pulled. I was very fortunate to have teachers in school who were understanding about my problem and the job I've worked for the last 20 years has been equally understanding (some get frustrated when I miss work, but not all). I generally miss one to two days a month when I have a bad flare-up. I'm glad my job offers unpaid leave through FMLA, so I'm not penalized for missing work.
About six years ago when I went off birth control so my husband and I could try to start a family and my IBS-D changed to where two or three days a week I would be constipated to the point that I was purposely eating my old trigger foods to get sick enough to go to the bathroom. My doctor suggested I start taking Ducolax before bed to see if that would help. I still had flare-ups every morning, but they would go away after I had a bowel movement, so I was functioning.
On January 27th I ended up in the ER with appendicitis and they removed my appendix the next day. Now, almost three months later, I am firmly in the IBS-C category. I have pain and bloating daily and occasionally I get nauseous and have the sweats like I'm running a fever. Right now, I'm going on day four without a bowel movement, even though I've taken Dulcolax and Miralax with no results.
I'm 41 years old and I fear that I'm going to have to relearn how to deal with my IBS all over again. I'm planning on calling my doctor on Monday to go in and talk to him, as I feel we may have to change my meds yet again. It gets so frustrating living with this condition. However, it's comforting to know that there are other people out there who deal with it as well. Thank you for giving us a place to tell our stories.
E-mail Amanda: mailto:[email protected]
I have been dealing with IBS for 15 years! Everyday is a struggle to deal with the constant pain that comes with this debilitating disorder. I have given up almost all foods, especially items containing gluten, and that has helped some. But I am still in pain with every bowel movement.
When I go to have a bowel movement I feel like I'm in labor, but it's worse! It will not stop until I push out enough stool. It's sad just to have a bowel movement. I have tried many, many things to help ease the pain. Nothing has worked. My doctor says it's in my head and prescribed anti-depressants! Needless to say they don't they work. Because I'm not crazy, I'm in actual pain! I wish I had answers not these useless medicines that do more harm than good.
E-mail Amy: mailto:[email protected]
I suffered from stomach pain for about seven years. Typical onset would be sudden and severe and include me using the bathroom and vomiting bile. I was mis-diagnosed with diverticulitis. The pain became more and more frequent and doctors were telling me it may be neurological.
I had a severe bout of pain years later that made me go back to the doctors to get more tests. They said I had an ileus and my gallbladder was functioning at eight per cent. They removed it and I kept having symptoms. I at first was severely constipated and the pain would wake me up. I often considered going into the ER. I actually went to the ER one day and they did a CT scan and said I was just constipated.
I went to my gastro and had a myriad of tests: upper GI, colonoscopy, MRI, found nothing. I was suffering and actually ended up quitting my job because I really couldn't function normally. Stress made things worse. I am trying Colestid (colestipol) micronized tab 1gm two times a day. This is my first week on it but I am hopeful after reading all the reviews that this may help.
E-mail Olivia: mailto:[email protected]
I am 71 and generally in great shape and with decent energy. I had a prolapsed uterus and had a minimally invasive hysterectomy where my uterus and fallopian tubes were removed and my 'dropped' bladder suspended. The anesthesia was very constipating. I had no problems urinating post-surgery, but the discomfort of constipation caused my greatest recovery pain.
I had previously struggled with IBS for years and cleared it up with acupuncture. My bowels had been pretty regular with occasional help from a strong probiotic (which we keep refrigerated) from Whole Foods. My 82-year old husband also found the probiotics helped to keep him regular.
Back to my post-surgical reality. My health-minded daughter-in-law brought me several constipation-fighting products after my surgery, one of which was Smooth Move Tea which stimulates peristatic action to move the bowels. I had tried Miralax and 5mg of Dulcolax pills and nothing happened.
The only commercial treatment that relieved constipation was Dulcolax suppositories, another remedy recommended by my surgeon. One suppository worked like magic with no pain or drama, but I did not want to become habituated to them.
Finally, the night before my two-week check-up I decided to try the Smooth Move (senna) tea. I consume lots of decaffeinated teas. I always leave the mugs of tea on my counter to steep and by the time I got back to it, the tea was a strong, pleasant brew.
The next morning, I awoke to the cramps described by so many other contributors who have taken senna. Like them, I thought I might die and yet they did not lead to a BM. My pain was more like labor contractions, especially painful because I was full of...well, you know, which causes its own discomfort.
I knew I couldn’t drive to my appointment and I took one of the narcotic painkillers I left the hospital with (they were no help with the pain at all). I had avoided those because of their constipating effects. I called an Uber and told the driver to pull over midway so I could vomit, outside the car. I also was tempted to go to an emergency room, but toughed it out.
My doctor wasn’t worried about the cramping and noted that I was in good shape after the surgery. Once I got home I used my last Dulcolax suppository and finally my bowels moved and moved. The pain of this experience lasted several days – probably because of the surgery. I still worry that the contractions damaged the bladder suspension, but time will tell.
I continued drinking copious amounts of water, eating ruffage (salads, veggies, legumes and fruit) and taking high doses of magnesium, vitamin C and regular doses of probiotics. I finally could have normal BMs some of the time, but any deviation from this protocol and I become constipated. It is a comfort to read that the contractions, nausea and out of control pain were not unique.
E-mail Lynn: mailto:[email protected]
I was a premature baby and have always had asthma and stomach trouble. Some of my earliest memories are of my mom massaging my tummy because I couldn't get gas out and it hurt. I was chronically constipated most of my life as well. These things were just accepted as 'part of life' so they were never brought up with any physician.
After having my first set of twins I developed severe upper right quadrant pain with extreme bloating, flatulence and bouts of uncontrollable diarrhea. I went to the ER and they said it was 'no big deal', that it was 'just IBS'. My PCP tried me on sucralfate, Miralax and stool softeners, all to no effect.
After my second set of twins my symptoms worsened. I bloated so badly that I couldn't fit into any of my clothes. I had to wear my husband's pants, bras were painful and too constricting and people constantly asked me 'when I was due'. One or two were concerned that I might have a tumor or cancer if I was that big and wasn't pregnant.
I went back to ER and was told the same thing: it was just a 'little bloating', not to the level of 'distention' and likely just IBS. My husband was angry (I was too tired to muster up any anger). He took me to a second ER for a different opinion and was told the same thing. Then I had what I thought was a heart attack. My arm went numb, my chest hurt. I called my PCP who had me in right away and ordered a chest x-ray and an ultrasound.
At this point I was having a ton of referred shoulder pain as well as the other symptoms. My doctor said I was 'literally full' of gallstones and that my gallbladder was swollen and probably diseased. She said that normally people who have my problem can't stand having their back touched. I, however, was unable to feel any pain from the outside. After that I had my gallbladder removed.
I felt better for a couple months - my swelling decreased, my pain reduced. But things never fully went back to how they were before. I had more and more problems with diarrhea and was referred to a GI. He did think that I had IBD/IBS but he also said that often that condition is a symptom of other problems. He performed a gastroscopy to look for ulcers and stomach problems.
He did find a rare growth (that he removed) but he said it's probably only rare because of the infrequency of gastroscopies. He then sent me to a super-specialist for an ERCP to determine whether or not I had sphincter of oddi dysfunction. I did have this, so I had a sphincterectomy (they cut the muscle to relieve pressure). However, they were concerned because my pre-ERCP MRI showed possible pancreas divisum that was confirmed by the ERCP.
He said one out of 10 people has that birth defect and 95% of them live life with no problems, not even aware of the defect unless there was an autopsy (suggesting the real occurrence may be higher than estimated). However, after the ERCP I continued to experience upper right quad pain, back pain, referred shoulder pain, chronic constipation punctuated by unpredictable and uncontrollable diarrhea and, weirdly, a bubbling sensation on my right side coupled with knocking around that was so forceful that it felt like a baby kicking.
I had my PCP check me for a parasite as I had travelled to Greece at one point and frequently ate at restaurants with non-American cuisines. Thankfully the test was negative but the GI suspected pancreatic issues. I went back to the super-specialist who sent me for an upper endoscopic ultrasound and that confirmed scarring in the pancreas, so I was diagnosed with chronic pancreatitis in addition to the IBS/IBD.
Since then I keep a log in my phone with foods that always upset my stomach and foods that sometimes upset my stomach. I was put on Creon and the dose was eventually put at the max level (36k units). This all spanned a five-year period filled with tons of imaging and lab work that got me no answers.
This is an extremely condensed version of my tale that does not include the non-GI related stuff. For two years I was bedridden while I resisted pain meds in favor of alternative pain management. The struggle did me in, it consumed my life and caused my muscles and nerves to degenerate and so I began pain management and got my life back little by little, although I still don't work yet.
I have also tried anti-spasmodics Bentyl (brand and generic), something that started with an R or L (I want to say it was prescription-strength Imodium) and Librax. The Bentyl and the non-Librax (whatever it was) didn't work for me at all. The Librax worked. I took it for four or five years before I got an insurance that wouldn't cover it. They said it was because it was controlled and there were other non-controlled options available and the cost without insurance was $400/month through CVS. My husband said we could do it but it would be better if there was a cheaper alternative.
I chose to re-do the drug trial I had already done four or five years prior. They doubled the Bentyl dose and I experienced acid reflux so badly that my throat closed up and I got a steroid shot in the butt to reopen it, then five days of prednisone and an ENT follow-up. The ENT said the acid reflux caused mucous to sit on my vocal chords which caused them to stop functioning correctly (I had pre-existing damage because of a bad reaction to extended release metformin I was taking for a non-GI condition).
I had to be sent to a vocal chord specialist who gave me vocal chord physiotherapy to correct the problem and I was put on Prilosec by the ENT. The GI switched me to hyoscyamine. It did work but it caused me to 'zombie out' for about a week, after which that problem eased up until it was gone. I still had some acid reflux, however I wasn't sure if the acid reflux was still because of the Bentyl or not and the hyoscyamine was not covered by insurance either but was only about $25/month.
So the ENT changed my prescription to extended-release Prilosec and life went on with hyoscyamine and mild acid reflux. Then about a month before Christmas (about eight months on hyoscyamine) my left arm went numb and I had the feeling that I was gonna drop whatever I was holding.
It turned out that my nerve degeneration from being bedridden had been exacerbated by the 45 degree sleep position that the acid reflux treatment required. I now have physiotherapy for that and decided I needed to push for the Librax, whatever the cost. The GI agreed that the side effects from hyoscyamine were not tolerable and resubmitted the Librax prescription. We expected to have to do a 'prior authorization' but it seems that although I had the same insurance company, they changed their prescription coverage and Librax was now covered. Yay!
So I got to return to what worked with the fewest side effects. I am now just four days in and still fighting the initial tiredness, but I already have zero acid reflux. I do not know what the future holds but I hope my experiences with IBS/IBD are helpful to others.