Living with an IBD

[Dyslexxie]

I've been suffering from a mystery digestive issue for many many years, probably going on well over 15 years now. From the time I was really young I've had issues with food - lack of appetite, nausea, bad reactions to a lot of foods (even though I have no allergies), which eventually evolved into vomiting and severe pains that would result in overnight stays in the hospital, all of which would result in very strange diagnosis: appendicitis, kidney infections, uterine infections, etc. Basically, I'd get sent home after being given a shot of morphine with some antibiotics and told to wait. Over the last few years the episodes have increased to the point where over a period of three months I couldn't hold food or drinks down, and even water would make me throw up.
I sort of know what triggers my episodes of nausea and vomiting, although sometimes it just happens for no reason. It's gotten to the point where I'm sick of people telling me to 'avoid this, try that' because I've tried it all, and it hasn't exactly helped my situation. What's good for me one time may make me sick the next. I'm also kind of sick of people making jokes about anorexia, or how lucky I am that I can stay skinny so 'easily' thanks to my stomach issues. Because vomiting to stay skinny is so fun, right?
I love food (when I can eat), but it's so inconsistent that I lack an appetite and I really struggle with maintaining a healthy body weight. My body fat is at about 12% now, I'm 100 lbs (and 5'5), and my energy levels suck.
One specialist thought it might be Crohn's disease (Gastroduodenal Crohn's disease, the puking kind). It's still unconfirmed and I still need to see another specialist and do additional testing, but while I wait, I'd be kind of curious to hear your guys' experiences with inflammatory bowel diseases (not necessarily Crohn's) and how y'all handle them, what you take to manage them, and what kind of diets you guys may follow.

 

[ceecee]

My sister in law has GCD. She has had issues most of her life, much like you have had. She is also underweight, has had dental issues due to all the vomiting. She and her gastroenterologist wanted to avoid surgery obviously so they tried her on Remicade but she had a lot of side effects so they started her on Humira. That made so much difference for her. I would tell you not to hesitate in getting the tests and a plan of action for medication because the sooner this is treated, the sooner your intestines can start healing and avoiding surgery. It was night and day for my sister in law, she has very little issues now. She's up to a healthy weight, the dental issues are gone and she is able to travel and live normally.

 

[Dyslexxie]

My sister in law has GCD. She has had issues most of her life, much like you have had. She is also underweight, has had dental issues due to all the vomiting. She and her gastroenterologist wanted to avoid surgery obviously so they tried her on Remicade but she had a lot of side effects so they started her on Humira. That made so much difference for her. I would tell you not to hesitate in getting the tests and a plan of action for medication because the sooner this is treated, the sooner your intestines can start healing and avoiding surgery. It was night and day for my sister in law, she has very little issues now. She's up to a healthy weight, the dental issues are gone and she is able to travel and live normally.

Awww damn, dental issues are one of my biggest paranoias. My teeth are fine now, granted I'm only 24 and the vomiting has only been bad for a few years, but long term I can't even imagine what my teeth could look like. Are there any side effects for her current medication?
Do you by chance know what tests helped her GP narrow down her diagnosis? Most of the doctors I've seen so far seen to run around in circles, sending me to various tests and just giving up after a while. My diagnosis have ranged from uterine infections to cysts to kidney infections to anorexia, with no real basis for any.

 

[Showbread]

I would definitely look into some sort of autoimmune diagnosis. Another thing to consider would be a blockage... I have a cousin with Krohns who had scar tissue leftover from a previous surgery that eventually blocked her bowel. It was right in the middle of her GI tract, so they couldn't find it even though they did a colonoscopy AND an endoscopy. They didn't find until she swallowed a little camera and it got stuck. They operated to remove the blockage and all was well again.

Psychological problems, specifically anxiety can also make these issues 100x worse and trigger episodes. I know someone who started taking an SSRI and it helped her ulcerative colitis.

 

[Dyslexxie]

I would definitely look into some sort of autoimmune diagnosis. Another thing to consider would be a blockage... I have a cousin with Krohns who had scar tissue leftover from a previous surgery that eventually blocked her bowel. It was right in the middle of her GI tract, so they couldn't find it even though they did a colonoscopy AND an endoscopy. They didn't find until she swallowed a little camera and it got stuck. They operated to remove the blockage and all was well again.

Psychological problems, specifically anxiety can also make these issues 100x worse and trigger episodes. I know someone who started taking an SSRI and it helped her ulcerative colitis.

That's so rough, I can't even imagine how frustrating that must feel! I have an endoscopy booked in 3 months (I've been waiting for 2 years, thanks public health care!) so I hope that'll at least confirm it.

That's interesting you mention. I've recently started taking both an SSNRI and anxiety meds and I would say it's helped a bit, but if I think back, the worst episodes of nausea and vomiting were during times of extreme anxiety. It's something I'll note over the next little while and see if managing the anxiety and depression will help with the digestive issues. Thank you for that tip, I didn't even think about that!

 

[Showbread]

That's interesting you mention. I've recently started taking both an SSNRI and anxiety meds and I would say it's helped a bit, but if I think back, the worst episodes of nausea and vomiting were during times of extreme anxiety. It's something I'll note over the next little while and see if managing the anxiety and depression will help with the digestive issues. Thank you for that tip, I didn't even think about that!

No problem. When my anxiety gets really bad I tend have IBS issues. Obviously that's nothing compared to what you're dealing with, but thought it was worth mentioning.

 

[ceecee]

Awww damn, dental issues are one of my biggest paranoias. My teeth are fine now, granted I'm only 24 and the vomiting has only been bad for a few years, but long term I can't even imagine what my teeth could look like. Are there any side effects for her current medication?
Do you by chance know what tests helped her GP narrow down her diagnosis? Most of the doctors I've seen so far seen to run around in circles, sending me to various tests and just giving up after a while. My diagnosis have ranged from uterine infections to cysts to kidney infections to anorexia, with no real basis for any.

The side effects for Humria that she had were like headaches and feeling congested for a few weeks when she started it. I know the area where she got the injection was sore and bruised too but that doesn't happen now. When she and my brother moved back to Michigan from BFE Montana, I told her - we're taking you to a real fucking doctor in a real fucking hospital so we took her to the University of Michigan medical center. This whole thing took about a month- 6 weeks between seeing the internist then the gastroenterologist, the tests and the meds. They did not dick around with her at all but the experiences you have had sound exactly like what she went through for a long time with other doctors.

I'm not 100% sure on all her tests but the admitted her for a few of them. Definitely endoscopy, sigmoidoscopy and a biopsy (this is how they found the inflamed cells and knew for sure). I think a MRI or CT, in addition to the normal blood and fecal tests. Those were not fun weeks for her, I know I was there but they were worth it. She goes back every 6 months, I think. They want to make sure there aren't issues with the meds and no fistulas or other complications. She watches what she eats, keeps a food journal but other than that, no problems. What I learned from this is that sooner it's properly treated is key and the doctors said that over and over.

 

[ceecee]

I would definitely look into some sort of autoimmune diagnosis.

Yes, this too for sure. My sister in law doesn't have Celiac disease, Hashimoto's, Myasthenia gravis, Type I diabetes or any of those because they tested for them. She does have issues with her thyroid though. They do worry about scar tissue greatly, for exactly the reason Showbread mentioned - blockage. Anxiety does make it worse and my sister in law has some, maybe due to the CD, maybe exacerbated by it. I don't know. But even that has improved a great deal.

 

[Showbread]

Yes, this too for sure. My sister in law doesn't have Celiac disease, Hashimoto's, Myasthenia gravis, Type I diabetes or any of those because they tested for them. She does have issues with her thyroid though. They do worry about scar tissue greatly, for exactly the reason Showbread mentioned - blockage. Anxiety does make it worse and my sister in law has some, maybe due to the CD, maybe exacerbated by it. I don't know. But even that has improved a great deal.

I believe Krohns technically falls into the autoimmune category as well. Thad why is reasons to immunosuppressants/steroids like Humira, pregnasone, etc.

 

[magpie]

I have a form of dysautonomia, which can cause all the things you've mentioned. But if you're not having an issue with fainting or dizziness, what you have is probably not an autonomic nervous system disorder.

I'm currently vegan as an attempt to handle my stomach issues. It does a bit, but not a whole lot. Still, I'll take a bit of an improvement rather than nothing at all. (I don't have a gall bladder though, so the lack of gall bladder may be what makes eating cheese and other dairy so difficult and explain the lack of improvement for the symptoms from my actual illness.)

I have slow gastric emptying. You might too, but that's really just a symptom of an actual disorder, in my experience.

 

[Dyslexxie]

The side effects for Humria that she had were like headaches and feeling congested for a few weeks when she started it. I know the area where she got the injection was sore and bruised too but that doesn't happen now. When she and my brother moved back to Michigan from BFE Montana, I told her - we're taking you to a real fucking doctor in a real fucking hospital so we took her to the University of Michigan medical center. This whole thing took about a month- 6 weeks between seeing the internist then the gastroenterologist, the tests and the meds. They did not dick around with her at all but the experiences you have had sound exactly like what she went through for a long time with other doctors.

I'm not 100% sure on all her tests but the admitted her for a few of them. Definitely endoscopy, sigmoidoscopy and a biopsy (this is how they found the inflamed cells and knew for sure). I think a MRI or CT, in addition to the normal blood and fecal tests. Those were not fun weeks for her, I know I was there but they were worth it. She goes back every 6 months, I think. They want to make sure there aren't issues with the meds and no fistulas or other complications. She watches what she eats, keeps a food journal but other than that, no problems. What I learned from this is that sooner it's properly treated is key and the doctors said that over and over.

It makes a huge difference how dedicated the medical professional is for sure, and unfortunately (blaming it on the public health care system again, but I'm pretty bitter) I think it's easier for most to just wave it on and overlook a lot of issues. One of my friends saw 6 specialists before he ended up in the hospital due to dehydration/malnutrition caused by what was later diagnosed as Colitis. I'll keep pressing my family doctor and request these tests, and hopefully it'll be addressed sooner rather than later.

I have a form of dysautonomia, which can cause all the things you've mentioned. But if you're not having an issue with fainting or dizziness, what you have is probably not an autonomic nervous system disorder.

I'm currently vegan as an attempt to handle my stomach issues. It does a bit, but not a whole lot. Still, I'll take a bit of an improvement rather than nothing at all. (I don't have a gall bladder though, so the lack of gall bladder may be what makes eating cheese and other dairy so difficult and explain the lack of improvement for the symptoms from my actual illness.)

I have slow gastric emptying. You might too, but that's really just a symptom of an actual disorder, in my experience.

I'm so sorry, that sounds so difficult to manage! Has veganism helped make it better/reduce the symptoms? That's one diet I haven't yet tried but maybe it's worthwhile. Has it been a difficult adjustment?
I can't say I've ever fainted and I would say the cause of dizziness is anemia/malnutrition due to the nausea and vomiting.

How do you manage your symptoms, especially with the lack of a gall bladder? I've struggled a lot trying to keep the nausea at bay. I find it's almost a daily thing, especially in the mornings where I need at least a few hours after waking up for my stomach to just be normal and not queasy. Otherwise if I force it and try to eat, all bets are off.

 

[magpie]

I'm so sorry, that sounds so difficult to manage! Has veganism helped make it better/reduce the symptoms? That's one diet I haven't yet tried but maybe it's worthwhile. Has it been a difficult adjustment?
I can't say I've ever fainted and I would say the cause of dizziness is anemia/malnutrition due to the nausea and vomiting.

How do you manage your symptoms, especially with the lack of a gall bladder? I've struggled a lot trying to keep the nausea at bay. I find it's almost a daily thing, especially in the mornings where I need at least a few hours after waking up for my stomach to just be normal and not queasy. Otherwise if I force it and try to eat, all bets are off.

Veganism for me was an easy adjustment, since I'd already been vegetarian for ten years. Also, as I'm sure you experience too, I don't really have a huge appetite anyway, so I don't feel like I'm restricting. In terms of helping make it better or reducing the symptoms, it helps marginally. As in, not a lot. But like I said, I'll take a little improvement over nothing at all. If you were to go vegan, you'd have to decide for yourself whether or not it was helpful for you. Maybe just do a trial run, and after a certain amount of time decide if it's worth it to continue? I mean, obviously the idea is for you not to lose weight, and if you started losing weight you should probably stop immediately. But I've actually gained weight through being vegan, which is a good thing.

In terms of managing nausea, I take zofran, which helps but doesn't keep it away completely. Zofran can also cause constipation, which adds a whole nother set of issues, unfortunately. If it's a little bit of nauseau I just ignore it and go about my day. If it's a lot of nausea I just sit extremely still and hope it eventually passes. Which isn't very useful in terms of advice, I know. I used to also have really bad "morning sickness" (that's what I called it ) but I had to go to school, so... I don't know. I don't want to tell you not to eat, but obviously it helps to not eat.

As for managing my lack of gall bladder, I don't know? It's been so long since I've had a gall bladder, which is a really weird thing to write, but I almost feel like it's the least of my problems. It was removed in error, before anyone could figure out what was wrong with me and was just grasping at straws.

But speaking of that, keep trying to get a diagnosis. I know it's hard, but you know yourself best and you deserve treatment. I was given morphine a lot too when I was undiagnosed, and it really hurt my digestion and made my stomach a lot worse.

 

[Dyslexxie]

Veganism for me was an easy adjustment, since I'd already been vegetarian for ten years. Also, as I'm sure you experience too, I don't really have a huge appetite anyway, so I don't feel like I'm restricting. In terms of helping make it better or reducing the symptoms, it helps marginally. As in, not a lot. But like I said, I'll take a little improvement over nothing at all. If you were to go vegan, you'd have to decide for yourself whether or not it was helpful for you. Maybe just do a trial run, and after a certain amount of time decide if it's worth it to continue? I mean, obviously the idea is for you not to lose weight, and if you started losing weight you should probably stop immediately. But I've actually gained weight through being vegan, which is a good thing.

In terms of managing nausea, I take zofran, which helps but doesn't keep it away completely. Zofran can also cause constipation, which adds a whole nother set of issues, unfortunately. If it's a little bit of nauseau I just ignore it and go about my day. If it's a lot of nausea I just sit extremely still and hope it eventually passes. Which isn't very useful in terms of advice, I know. I used to also have really bad "morning sickness" (that's what I called it ) but I had to go to school, so... I don't know. I don't want to tell you not to eat, but obviously it helps to not eat.

As for managing my lack of gall bladder, I don't know? It's been so long since I've had a gall bladder, which is a really weird thing to write, but I almost feel like it's the least of my problems. It was removed in error, before anyone could figure out what was wrong with me and was just grasping at straws.

But speaking of that, keep trying to get a diagnosis. I know it's hard, but you know yourself best and you deserve treatment. I was given morphine a lot too when I was undiagnosed, and it really hurt my digestion and made my stomach a lot worse.

Huh that's interesting, maybe I'll try veganism for 1 day a week to start or something similar and maybe see if it helps. Food and I have such a complicated relationship by this point that I should probably figure something out already.

I can't believe they removed your gallbladder. Is that still common practice? I always thought it would be a drastic solution, only used as a very last resort. Do you have to take any medication post-surgery?

A naturopath I saw a while back suggested mine was an issue and that if it's not managed I would have to get it removed as well, but I'm not sure how much basis there could be to their claims. At the time I was pretty desperate to try anything but her plant extracts weren't very effective, but that could also have to do with a lack of a proper understanding of my issue.

 

[magpie]

Huh that's interesting, maybe I'll try veganism for 1 day a week to start or something similar and maybe see if it helps. Food and I have such a complicated relationship by this point that I should probably figure something out already.

I can't believe they removed your gallbladder. Is that still common practice? I always thought it would be a drastic solution, only used as a very last resort. Do you have to take any medication post-surgery?

A naturopath I saw a while back suggested mine was an issue and that if it's not managed I would have to get it removed as well, but I'm not sure how much basis there could be to their claims. At the time I was pretty desperate to try anything but her plant extracts weren't very effective, but that could also have to do with a lack of a proper understanding of my issue.

What were the plant extracts? I've taken digestive enzymes on and off for a long time, which are full of plants (and sometimes ox bile ) and they seem to stop working after a while. In fact, I'm not even sure if they are the things that are effective in the first place or if it's something else I'm occasonally doing. But anyway, I'm just mentioning it because it's something that has potentially? worked for me, maybe. Haha. I'm obviously no doctor, but if anyone ever wants to remove your gall bladder, please make sure they tell you why.

Apparently my gall bladder was removed because it wasn't digesting things correcly. I didn't have any gallstones or anything, but it just wasn't effective, and they thought that it was what was causing me pain and removing it would cure me. The thing is, dysautonomia effects all digestive organs. So because none of my organs function properly anyway, removing it made me worse. I mean, by this logic they may as well have removed my stomach and heart. Laparoscopic gall bladder surgery is actually pretty common. They took out my appendix too for good measure, but that's pretty par for the course.

I'm not saying that it isn't your gall bladder causing you issues or that you getting it removed wouldn't help you, because I don't know and you're not me. So yeah, like I said, I really hope someone finds out what's going on with your body and that you can find some relief from your symptoms.

 

[Dyslexxie]

I recently had another strange development in my stomach issues that I thought I would share.

I've been waiting for a GI appointment for 2 years and finally I was informed I had a specialist appointment early this week. Going to the medical office, I'm sat down by a very aggressive nurse who begins questioning me. Assuming this is a GI office I begin telling her about my stomach issues...issues she immediately blames on something I'm doing. She keeps implying I'm making myself sick, asking me if I yoyo diet, binge and purge, etc. I'm incredibly uncomfortable with this but she's insistent and almost accusatory. Anyway, assuming the specialist will be better I hang in there (trying not to cry, because I'm scared of what she'll diagnose me with if I do) and am firm that this is NOT an eating disorder.
I finally see the specialist who informs me she's a psychiatrist...awkward. something I wasn't aware of, but it all makes sense now. She then assesses me and says I must've been wrongfuy referred because my issues don't sound like they are psychological but are all stomach related and should see a GI.
She then looks at results from a few years back and notices something unusual...3 years ago I had two tumors on my gallbladder. This is something that I never knew about or was treated for. I'm a little shocked this was never addressed (and quite upset about the realization my doctor referred me to a psychiatrist for an eating disorder, and scared by the aggressive nurse) but I walk out, and cry all the way home because this is what my waiting and suffering has lead to. It's definitely my fault I never clarified with my doctor what the specialist was but holy...
So now I'm at a point where I'm too scared to seek help and ready to just give up on finding a cause because I've been through enough over the years.

 

[Forever]

I recently had another strange development in my stomach issues that I thought I would share.

I've been waiting for a GI appointment for 2 years and finally I was informed I had a specialist appointment early this week. Going to the medical office, I'm sat down by a very aggressive nurse who begins questioning me. Assuming this is a GI office I begin telling her about my stomach issues...issues she immediately blames on something I'm doing. She keeps implying I'm making myself sick, asking me if I yoyo diet, binge and purge, etc. I'm incredibly uncomfortable with this but she's insistent and almost accusatory. Anyway, assuming the specialist will be better I hang in there (trying not to cry, because I'm scared of what she'll diagnose me with if I do) and am firm that this is NOT an eating disorder.
I finally see the specialist who informs me she's a psychiatrist...awkward. something I wasn't aware of, but it all makes sense now. She then assesses me and says I must've been wrongfuy referred because my issues don't sound like they are psychological but are all stomach related and should see a GI.
She then looks at results from a few years back and notices something unusual...3 years ago I had two tumors on my gallbladder. This is something that I never knew about or was treated for. I'm a little shocked this was never addressed (and quite upset about the realization my doctor referred me to a psychiatrist for an eating disorder, and scared by the aggressive nurse) but I walk out, and cry all the way home because this is what my waiting and suffering has lead to. It's definitely my fault I never clarified with my doctor what the specialist was but holy...
So now I'm at a point where I'm too scared to seek help and ready to just give up on finding a cause because I've been through enough over the years.

I didn't even know this thread existed. Sorry you are going through this.

 

[Dyslexxie]

I didn't even know this thread existed. Sorry you are going through this.

It's just one of those things I have to accept as it is unfortunately.

 

[magpie]

Keep going! You can do it.

 

[prplchknz]

that sucks, i hate when people do that, it seems if you're a girl you either have an eating disorder or are pregnant. and IT"S like no i'm not either one damn you!!!!! my friend was bulemic in highschool it ended up triggering gastro paresis in her, basically if she eats normally she throws it back up and causes tons of pain. so she eats through a tube at night, I don't have ibd but i think i have bad acid reflex because i through up bile/stomach acid a lot. right now i'm really constipated i took a laxative which i never do. last night i was in so much pain i was crying on the bathroom floor thinking i was going to die and then i drank a bunch of water and felt better (keeping in mind i haven't pooped in 3 days) so i thought it was constipation but after the water i thought it was just dehydration but then it was back this morning so i drove myself to the drug store in the worse pain of my life like it hurt to steer or raise my right arm or move from standing to sit and vice versa and i never have pain like that. like ever. And i don't fuck around well i do it takes me a lot to take anything, but i don't think i could tolerate this pain long term. i'll just be happy once i can poop and this stupid pain goes away. someone said its probably my appendist but i don't want it to be so it's not.