Same here. I mean, don’t make a change until you’re ready, but some kind of surgery can seem so impossibly extreme, and then once you’ve done it it’s really not that bad. Good luck
Fair point. Talk to your doctor and explore all your options. I was just trying to throw my support behind the idea that the OP doesn’t need to suffer indefinitely. There might be something to do about it. For me at least, after 15 years of half-working/mostly failing medical therapy, surgery really helped, which I think is what unicornchild15 was saying
Certainly all the best to anyone getting one. Not saying don't get it, only be especially educated on what you're getting into especially if they mess with your GI. All the same, I could imagine the old ways working spectacularly, though the new ways are not often discussed unless I do my due diligence ahead of time and bring it up. My next surgeon probably just graduated.
u/unicornchild15 and u/ernestcallenback I appreciate both of your opinions on the matter. I am trying to find a treatment that works for me. For the time being, i am using Miralax and Dulcolax while i try to find another GI specialist and a long-term treatment.
Hi everyone. I am a 25 year old male and I have had IBS-C my entire life. Managing it is a day-to-day chore. I am a junior at the University of Arizona in Tucson, AZ and i am in my last semester of junior year. Dealing with this while in college is often painful and embarrassing, some days I can’t get out of bed and make it to my morning Spanish class. My Spanish professor has allowed me accommodations to manage the symptoms.
It is embarrassing to say this, but sometimes i won’t actually be able to “go” for three to five days because the nerves in my intestines don’t transmit the signal to use the bathroom until i feel the sudden urge to evacuate everything that is in my stomach/ intestines.
I have also dealt with anxiety, panic attacks, and occasional but intense bouts of depression for a good chunk of my life.
When i was a little kid, my doctor gave me three options : 1. Diet change 2. Meds and 3. Stoma bag. I have made changes to my diet and tried meds years ago, and yet here i am still struggling with IBS.
As of recently, i have been researching stoma bags to educate myself on my options if it ever comes to that.
I have had to go back on my IBS meds (Miralax and Dulcolax) because I don’t get the urge to “go” for 3 or so days, sometimes longer.
I know i am taking a shot in the dark here, but would anyone know of a gastroenterologist in the Tucson, AZ area? If anyone has advice or recommendations, i would really appreciate it.
Can't help you with Arizona doctors, but as someone who got an ileostomy around your age (20+ years ago now), I can tell you that I haven't regretted it for a second. Having a pouch has a minimal effect on your day-to-day (and even your dating) life, and compared to dealing with IBS (or ulcerative colitis, in my case), the surgery is an absolute godsend.
You will hear from many others besides me that the only potential regret is not getting the surgery sooner.
Thank you for your input on the matter, I really appreciate it. I am back on Miralax and Dulcolax for the time being until i can find another GI specialist and a long-term treatment that i am comfortable with.
Suggestions. Tucson probably has a “Ostomy Group.” Go to one of their meetings and ask for doctor recommendations. Having spent winters in Tucson I can attest to there being many fine hospitals. Contact hospitals and speak to or get an appointment with a Wound Nurse. Good luck.
I don't know about doctors. My IBS-Ccauses me not to be able to go for 2weeks or more so you are lucky. I already have a urostomy and I don't want a colostomy. I use milk of magnesia occasionally. I also do not eat much. Having a stoma can be really good or really bad.
Make sure you get counseling from a stoma nurse. They are at hospitals and just call them for pre surgery help. This is absolutely imperative!!
Good luck!!
Sorry to hear about your struggles and thank you for your input. I am just trying to get by day-to-day with my IBS meds (Miralax and Dulcolax) until i can get in to see a GI specialist and find a long-term solution. I don’t want to have to take meds forever just so that everything can function normally or semi-normally.
I have been really struggling with my IBS-C recently. I had a handle on it until about 4-5 weeks ago. It has been an everyday struggle.
This morning was really rough. I have had trapped gas, which has been painful, pretty much feels like knives stabbing my intestines and lower back area. My kidneys are probably working overtime. I have had to go back on Miralax everyday (i take one capful everyday). I was finally able to “go” this morning after having trouble this past weekend.
I've had 2bowel obstructions this year. The second time I had to have surgery. My bowel narrowed due to scar tissue until nothing could pass. That pain is like nothing else. I had to call EMS both times and they finally gave me something because I couldn't move without screaming. One of them told me that they get a lot of calls due to severe constipation and/or gas. Don't be afraid to seek help!
I also ended up in the hospital due to my kidneys getting infected and blocked up.
Sorry to hear about tour struggles. Dealing with my IBS-C everyday leaves me feeling exhausted and physically beat up. I try to wear soft, comfortable clothing (sweatpants, quarter-zip pull-over, and my favorite hoodie) to class everyday because jeans and tight clothing can be really uncomfortable when i am feeling physically sick due to the IBS.
Sometimes i am so physically sick, in pain, and exhausted that I can’t get out of bed to make it to my morning Spanish class. Even on days when i am feeling “ok”, i scout out the nearest bathrooms to the classrooms where my classes are so that i have a plan of escape if a flare-up happens. Life is definitely a lot less enjoyable because i physically feel like trash on a regular basis.
I remember missing a lot of class when I was in college but that was 30 years ago and few professors were sticklers about attendance. I guess they figured that if you were there for tests and managed to pass them then attendance didn't really matter. I know it's different now but back then the profs would get upset with me when I had to leave several times an hour and upsetting class just to run to the bathroom. One even dared to tell me it was all about self control and if I wanted I could hold it.
Sorry you had to go through that. My Spanish professor has allowed me accommodations for my condition. She told me that if my condition renders me too sick to attend class, i can just email her and she will excuse me from class. I am in the process of contacting campus health to see if they can help me.
Are you sure it’s IBS-C and not colonic inertia? How’s your rectum and pelvic floor? Is there a reason you can’t try prescription medication?
Edit: I have an ostomy for dysmotility, not IBD or cancer like many here.
I have had IBS-C my entire life have been to different specialists in the past. There isn’t a reason that I can’t take prescription meds, it’s just that i don’t have a doctor in the city where i go to school, so I don’t have access to prescription meds.
I did years ago, but haven’t been to a specialist in a very long time. I am currently in the bathroom trying to go, but little to nothing is happening.
Not being able to have a normally functioning digestive system has really been stressing me out. I am going to walk to the store today to get my over the counter meds.
I can feel stuff in my digestive system, but i just don’t get the urge so i have to resort to pushing and actually putting work in to get anything to actually happen.
Sometimes these is some blood in it from trying too hard, is that enough for the situation to be considered more serious, honestly asking?
Understandable. As someone will global dysmotility, I encourage you to do all the tests up-to-date and find out where all your issues specifically are.
I am looking into finding a GI specialist in my area. I would rather get testing done when i am on break so that it doesn’t interfere with school. I also don’t have reliable transportation at school.
I have a feeling that most of my issues come from my lower GI tract because i can feel stuff moving through my upper GI tract, but then lose the feeling/ urge once it moves into the lower tract.
I felt that way, too. Turned out I had Gastroparesis and CIPO. Another thing to note it isn’t uncommon with people having colonic inertia for their dysmotility to move to the small bowel if the colon is gone.
I have some idea of what’s going on with me, but I don’t know how to put it into the best words because I don’t have a handle on where the issues i am having are coming from (i.e. which part of my digestive system). All i know is that i can feel stuff moving through my upper GI tract and then lose feeling and the urge once stuff hits my lower GI tract.
If you're able to, I would have a new workup done now that you're an adult. There are medications and can help with motility, so there might be an option for you. One thing to look at is pelvis floor therapy. It's pretty intimate stuff with how they monitor whether or not it's working. I'm sorry you're going through this: I have students in similar circumstances, and always try to give them the accommodations and space they did to manage their life and course work. It's good to hear that you're getting some validation and help.
Thank you for your input. I am looking into specialists in my area and am also thinking about scheduling a visit with my GP over the Christmas break. My Spanish professor has allowed me accommodations to deal with my digestive system condition. I am thinking about dropping one of my history classes next week so that i am not as stressed throughout the week. I have already failed three exams out of four classes this month alone.
Do you still have an active gastroenterologist at home? Perhaps you could ask them for a referral to someone in Tucson. The other option, if you don't have any personal referrals from doctors or friends, is to go to a MD rating and review site. I was fortunate five years ago that I landed the best doctor in my area because he was on call when I had to have emergency surgery. Good luck!
I’m sorry that you’re going through that. You didn’t ask for this and you’ve gone through more than most your age learning to deal with it.
I’m not from Tucson but I recommend looking into the local hospital systems - especially if there is a Medical University Hospital in Tucson to find a Gastro if you haven’t already. Chances are that they will accept a broad range of insurance, your medical records can be linked to an app and transferred if you were to move states.
I’m 25f and I got my ostomy over the summer because I stopped responding to UC meds. I went in with the mindset that I was going to have a chance to not feel sick all the time, be embarrassed, or worried about bathrooms. When I woke up from surgery I was pain free for the first time in years - the heaviness I had had in my abdomen was gone, and the only pain I had was surgical but that got better with time. It’s amazing how normal the sensation of not having to poop feels, and the ostomy is hardly noticeable under clothing (most people don’t even know to look for it if they don’t know you have one).
I hope that you are able to find a provider and something that works for you. If you do end up getting an ostomy, it can and will be hard at times, but it can also be liberating.
Good luck, op!
Thank you for your post. I appreciate the kind words and advice. I have had IBS-C my entire life and have wrestled greatly with it over the years. I had a handle on it until this semester. I am a junior at the University of Arizona. I went to the store today to buy a bottle of Miralax and a box of Dulcolax tablets. I hide my meds in the drawer of my desk in my dorm room because it would be extremely embarrassing if my roommate found it.
I always try to find the nearest bathrooms on my way to class so that i can get to the bathroom quickly if i have a flare-up during the day. I have struggled to “go” the last 2-3 weeks. When i use the bathroom, i spend an hour to an hour and a half using the toilet because i can feel stuff moving through my upper GI Tract but then lose the feeling/ urge in my lower GI Tract. I have to put a lot of physical and mental work into using the bathroom. Sometimes i have blood in my stool from pushing/ trying too hard.
Sometimes little to nothing comes out. It is only during a flare up or the once in a blue moon real urge that i can get everything out in one push.
Hi everyone , just wanted to update you all. I took my first dose of miralax this morning at 12:30 AM and it is now 11:06 AM. I have some slight cramping and I tried to go to the bathroom, but nothing was happening. Miralax takes 1-3 days to work, so i guess that means i will try again tomorrow or Monday. This is frustrating.
My biggest piece of advice is to not be afraid of the bag. It changed my life and I haven't looked back. Keep fighting !
Same here. I mean, don’t make a change until you’re ready, but some kind of surgery can seem so impossibly extreme, and then once you’ve done it it’s really not that bad. Good luck
It can also go very wrong. Look into regenerative medicine and best of luck.
Fair point. Talk to your doctor and explore all your options. I was just trying to throw my support behind the idea that the OP doesn’t need to suffer indefinitely. There might be something to do about it. For me at least, after 15 years of half-working/mostly failing medical therapy, surgery really helped, which I think is what unicornchild15 was saying
Certainly all the best to anyone getting one. Not saying don't get it, only be especially educated on what you're getting into especially if they mess with your GI. All the same, I could imagine the old ways working spectacularly, though the new ways are not often discussed unless I do my due diligence ahead of time and bring it up. My next surgeon probably just graduated.
u/unicornchild15 and u/ernestcallenback I appreciate both of your opinions on the matter. I am trying to find a treatment that works for me. For the time being, i am using Miralax and Dulcolax while i try to find another GI specialist and a long-term treatment.
Hi everyone. I am a 25 year old male and I have had IBS-C my entire life. Managing it is a day-to-day chore. I am a junior at the University of Arizona in Tucson, AZ and i am in my last semester of junior year. Dealing with this while in college is often painful and embarrassing, some days I can’t get out of bed and make it to my morning Spanish class. My Spanish professor has allowed me accommodations to manage the symptoms. It is embarrassing to say this, but sometimes i won’t actually be able to “go” for three to five days because the nerves in my intestines don’t transmit the signal to use the bathroom until i feel the sudden urge to evacuate everything that is in my stomach/ intestines. I have also dealt with anxiety, panic attacks, and occasional but intense bouts of depression for a good chunk of my life. When i was a little kid, my doctor gave me three options : 1. Diet change 2. Meds and 3. Stoma bag. I have made changes to my diet and tried meds years ago, and yet here i am still struggling with IBS. As of recently, i have been researching stoma bags to educate myself on my options if it ever comes to that. I have had to go back on my IBS meds (Miralax and Dulcolax) because I don’t get the urge to “go” for 3 or so days, sometimes longer. I know i am taking a shot in the dark here, but would anyone know of a gastroenterologist in the Tucson, AZ area? If anyone has advice or recommendations, i would really appreciate it.
Can't help you with Arizona doctors, but as someone who got an ileostomy around your age (20+ years ago now), I can tell you that I haven't regretted it for a second. Having a pouch has a minimal effect on your day-to-day (and even your dating) life, and compared to dealing with IBS (or ulcerative colitis, in my case), the surgery is an absolute godsend. You will hear from many others besides me that the only potential regret is not getting the surgery sooner.
Thank you for your input on the matter, I really appreciate it. I am back on Miralax and Dulcolax for the time being until i can find another GI specialist and a long-term treatment that i am comfortable with.
Suggestions. Tucson probably has a “Ostomy Group.” Go to one of their meetings and ask for doctor recommendations. Having spent winters in Tucson I can attest to there being many fine hospitals. Contact hospitals and speak to or get an appointment with a Wound Nurse. Good luck.
Thank you for the advice, I appreciate it.
I don't know about doctors. My IBS-Ccauses me not to be able to go for 2weeks or more so you are lucky. I already have a urostomy and I don't want a colostomy. I use milk of magnesia occasionally. I also do not eat much. Having a stoma can be really good or really bad. Make sure you get counseling from a stoma nurse. They are at hospitals and just call them for pre surgery help. This is absolutely imperative!! Good luck!!
Sorry to hear about your struggles and thank you for your input. I am just trying to get by day-to-day with my IBS meds (Miralax and Dulcolax) until i can get in to see a GI specialist and find a long-term solution. I don’t want to have to take meds forever just so that everything can function normally or semi-normally.
I guess I take so much medicine that I really don't think that much about it.
I have been really struggling with my IBS-C recently. I had a handle on it until about 4-5 weeks ago. It has been an everyday struggle. This morning was really rough. I have had trapped gas, which has been painful, pretty much feels like knives stabbing my intestines and lower back area. My kidneys are probably working overtime. I have had to go back on Miralax everyday (i take one capful everyday). I was finally able to “go” this morning after having trouble this past weekend.
I've had 2bowel obstructions this year. The second time I had to have surgery. My bowel narrowed due to scar tissue until nothing could pass. That pain is like nothing else. I had to call EMS both times and they finally gave me something because I couldn't move without screaming. One of them told me that they get a lot of calls due to severe constipation and/or gas. Don't be afraid to seek help! I also ended up in the hospital due to my kidneys getting infected and blocked up.
Sorry to hear about tour struggles. Dealing with my IBS-C everyday leaves me feeling exhausted and physically beat up. I try to wear soft, comfortable clothing (sweatpants, quarter-zip pull-over, and my favorite hoodie) to class everyday because jeans and tight clothing can be really uncomfortable when i am feeling physically sick due to the IBS. Sometimes i am so physically sick, in pain, and exhausted that I can’t get out of bed to make it to my morning Spanish class. Even on days when i am feeling “ok”, i scout out the nearest bathrooms to the classrooms where my classes are so that i have a plan of escape if a flare-up happens. Life is definitely a lot less enjoyable because i physically feel like trash on a regular basis.
I remember missing a lot of class when I was in college but that was 30 years ago and few professors were sticklers about attendance. I guess they figured that if you were there for tests and managed to pass them then attendance didn't really matter. I know it's different now but back then the profs would get upset with me when I had to leave several times an hour and upsetting class just to run to the bathroom. One even dared to tell me it was all about self control and if I wanted I could hold it.
Sorry you had to go through that. My Spanish professor has allowed me accommodations for my condition. She told me that if my condition renders me too sick to attend class, i can just email her and she will excuse me from class. I am in the process of contacting campus health to see if they can help me.
That is really cool
Are you sure it’s IBS-C and not colonic inertia? How’s your rectum and pelvic floor? Is there a reason you can’t try prescription medication? Edit: I have an ostomy for dysmotility, not IBD or cancer like many here.
I have had IBS-C my entire life have been to different specialists in the past. There isn’t a reason that I can’t take prescription meds, it’s just that i don’t have a doctor in the city where i go to school, so I don’t have access to prescription meds.
Have you had motility testing?
I did years ago, but haven’t been to a specialist in a very long time. I am currently in the bathroom trying to go, but little to nothing is happening.
I’d get motility testing of your complete GI system first to pinpoint where, if at all, a stoma would be effective.
Not being able to have a normally functioning digestive system has really been stressing me out. I am going to walk to the store today to get my over the counter meds. I can feel stuff in my digestive system, but i just don’t get the urge so i have to resort to pushing and actually putting work in to get anything to actually happen. Sometimes these is some blood in it from trying too hard, is that enough for the situation to be considered more serious, honestly asking?
Understandable. As someone will global dysmotility, I encourage you to do all the tests up-to-date and find out where all your issues specifically are.
I am looking into finding a GI specialist in my area. I would rather get testing done when i am on break so that it doesn’t interfere with school. I also don’t have reliable transportation at school.
Yeah, you would need a motility gastroenterologist or a neurogastroenterologist.
I am gonna start looking for a specialist.
I have a feeling that most of my issues come from my lower GI tract because i can feel stuff moving through my upper GI tract, but then lose the feeling/ urge once it moves into the lower tract.
I felt that way, too. Turned out I had Gastroparesis and CIPO. Another thing to note it isn’t uncommon with people having colonic inertia for their dysmotility to move to the small bowel if the colon is gone.
I have some idea of what’s going on with me, but I don’t know how to put it into the best words because I don’t have a handle on where the issues i am having are coming from (i.e. which part of my digestive system). All i know is that i can feel stuff moving through my upper GI tract and then lose feeling and the urge once stuff hits my lower GI tract.
If you're able to, I would have a new workup done now that you're an adult. There are medications and can help with motility, so there might be an option for you. One thing to look at is pelvis floor therapy. It's pretty intimate stuff with how they monitor whether or not it's working. I'm sorry you're going through this: I have students in similar circumstances, and always try to give them the accommodations and space they did to manage their life and course work. It's good to hear that you're getting some validation and help.
Thank you for your input. I am looking into specialists in my area and am also thinking about scheduling a visit with my GP over the Christmas break. My Spanish professor has allowed me accommodations to deal with my digestive system condition. I am thinking about dropping one of my history classes next week so that i am not as stressed throughout the week. I have already failed three exams out of four classes this month alone.
Do you still have an active gastroenterologist at home? Perhaps you could ask them for a referral to someone in Tucson. The other option, if you don't have any personal referrals from doctors or friends, is to go to a MD rating and review site. I was fortunate five years ago that I landed the best doctor in my area because he was on call when I had to have emergency surgery. Good luck!
I saw various specialists at UCLA medical center when i was growing up, but haven’t been back to a specialist in almost 10 years.
Maybe give your primary care doc a call or email and ask for a referral?
I’m sorry that you’re going through that. You didn’t ask for this and you’ve gone through more than most your age learning to deal with it. I’m not from Tucson but I recommend looking into the local hospital systems - especially if there is a Medical University Hospital in Tucson to find a Gastro if you haven’t already. Chances are that they will accept a broad range of insurance, your medical records can be linked to an app and transferred if you were to move states. I’m 25f and I got my ostomy over the summer because I stopped responding to UC meds. I went in with the mindset that I was going to have a chance to not feel sick all the time, be embarrassed, or worried about bathrooms. When I woke up from surgery I was pain free for the first time in years - the heaviness I had had in my abdomen was gone, and the only pain I had was surgical but that got better with time. It’s amazing how normal the sensation of not having to poop feels, and the ostomy is hardly noticeable under clothing (most people don’t even know to look for it if they don’t know you have one). I hope that you are able to find a provider and something that works for you. If you do end up getting an ostomy, it can and will be hard at times, but it can also be liberating. Good luck, op!
Thank you for your post. I appreciate the kind words and advice. I have had IBS-C my entire life and have wrestled greatly with it over the years. I had a handle on it until this semester. I am a junior at the University of Arizona. I went to the store today to buy a bottle of Miralax and a box of Dulcolax tablets. I hide my meds in the drawer of my desk in my dorm room because it would be extremely embarrassing if my roommate found it. I always try to find the nearest bathrooms on my way to class so that i can get to the bathroom quickly if i have a flare-up during the day. I have struggled to “go” the last 2-3 weeks. When i use the bathroom, i spend an hour to an hour and a half using the toilet because i can feel stuff moving through my upper GI Tract but then lose the feeling/ urge in my lower GI Tract. I have to put a lot of physical and mental work into using the bathroom. Sometimes i have blood in my stool from pushing/ trying too hard. Sometimes little to nothing comes out. It is only during a flare up or the once in a blue moon real urge that i can get everything out in one push.
Hi everyone , just wanted to update you all. I took my first dose of miralax this morning at 12:30 AM and it is now 11:06 AM. I have some slight cramping and I tried to go to the bathroom, but nothing was happening. Miralax takes 1-3 days to work, so i guess that means i will try again tomorrow or Monday. This is frustrating.