IBS-D, Please Help!

[Lauren Todd]

Hello all! I apologize for the length of this post in advance but please read as much as you can. I am at a loss. I feel very desperate and hopeless so I will take any advice/ help you can give me. My boyfriend suffers from IBS-D and I want to understand his condition more so I can help him. I have read endless amounts of articles and discussion groups but nothing is helping him. 

 

Regarding his symptoms: he struggles with all foods and changes to his diet don’t help much. He experiences cramping in his abdomen and says it is in a “C” shape above, around and below his belly button, predominately on his right side. When he eats he also experiences sharp stabbing pains that he describes as a wire moving around in his stomach. His pains are so severe he usually has to lay down after eating and the it will take his breath away. Within 10-60 minutes of eating a meal he has to use the restroom. He can not process blue dyes but doesn’t seem to have troubles processing other colors. He has not had a solid poop in years and goes to the bathroom anywhere from 4-8 times a day. 

 

What we have tried: I have read about the food maps and even if we stick to foods that are supposed to be better for him, it does not make a significant enough difference to continue the modified diet. This also goes for other diets such as dairy free, gluten free, high fiber, raw diets, cutting out certain things such as alcohol, soda, fried foods, etc. some diet changes more than others have helped ever so slightly in reducing the pain but again, not nearly enough to be maintainable in the long scheme of things. Heating pads and ice packs do not relieve any of the cramping or stabbing pains. Applying pressure to the area intensifies the pain. His pain will sometimes be so intense that he is I’m unable to sleep or he will be woken up from the pain. We have been to urgent care/ ER on multiple occasions because the pain has been unbearable. Medication wise we have tried general anti-diarrhea, FDGard, Culterelle, Imodium, dicyclomine and pantoprazole. Dicyclomine seems to work the best but it only slightly dulls the cramping and stabbing pains, it does not relieve or eliminate the symptoms. 

 

His quality of life is at an all time low. He spends a lot of time in the bathroom, does not do certain activities or avoids plans if he knows it will be an issue, he frequently gets in trouble at work for taking so many bathroom breaks and is struggling on a daily basis to manage this. He is 23 years old and is missing out on a lot because of the severity of his symptoms. Any advice you can give me, I’m open ears. Please help! 

 

 

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[Jeffrey Roberts]

Dear Lauren,

It is so thoughtful that your boyfriend has such a caring friend that is trying to help him feel better and have a reasonable quality of life. The description sounds really difficult for him and no doubt difficult for you to sit by and feel like you can't do anything to help.

The key thing is to get properly diagnosed. Has he ever been seen by a gastroenterologist or recommended by his family doctor to see a specialist? It seems like this has been going on for some time, but you didn't say. Does he know when this all started or has he had these symptoms since he was much younger?

I don't think we should assume that this is actually IBS. It could be other things like IBD (Crohn's disease or Ulcerative Colitis), Celiac disease, Bile Acid Diarrhea, Congenital sucrase-isomaltase deficiency, to name a few. It could be gallbladder related or even appendix. Just too hard to tell.

He really needs to work with his doctor to get some help as all of the medications that we might suggest require a prescription. Unfortunately, sadly, urgent care or ER are just not capable to helping in the low term with this.

I don't have any easy answers for you. I'm more than happy to answer any questions or help further.

[Lauren Todd]

Dear Lauren,
It is so thoughtful that your boyfriend has such a caring friend that is trying to help him feel better and have a reasonable quality of life. The description sounds really difficult for him and no doubt difficult for you to sit by and feel like you can't do anything to help.
The key thing is to get properly diagnosed. Has he ever been seen by a gastroenterologist or recommended by his family doctor to see a specialist? It seems like this has been going on for some time, but you didn't say. Does he know when this all started or has he had these symptoms since he was much younger?
I don't think we should assume that this is actually IBS. It could be other things like IBD (Crohn's disease or Ulcerative Colitis), Celiac disease, Bile Acid Diarrhea, Congenital sucrase-isomaltase deficiency, to name a few. It could be gallbladder related or even appendix. Just too hard to tell.
He really needs to work with his doctor to get some help as all of the medications that we might suggest require a prescription. Unfortunately, sadly, urgent care or ER are just not capable to helping in the low term with this.
I don't have any easy answers for you. I'm more than happy to answer any questions or help further.

Hi Jeffrey,
Thank you for taking the time to read my lengthy post and replying! He was officially diagnosed with IBS-D around 3 months ago but has been experiencing symptoms for about 3.5/4 years now. However, it has all been pretty manageable and his symptoms were far less severe. Things took a turn for the worst about a year ago and that’s how we got to this point. Unfortunately, he grew up in a home where you don’t go to the doctor unless it’s an emergency and I was able to finally talk him into going which is when he was diagnosed. They ruled out Crohn’s and Celiac Disease. He is also on the waiting list to be seen by a gastroenterologist to do further tests and also rule out the possibility of stomach ulcers as those tend to run in his family and his doctor said he could have both. I understand there’s not much to be done for ulcers other than prescription medications which is alright. I am just hoping to tackle the issues of his IBS since that is the only thing we are sure of at this time. I’ve done so much research but it just seems that nothing is helping him. I am truly at a loss and feel so helpless.


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[Jeffrey Roberts]

Thank you for filling in more details. I understand the reluctance of people about not wanting to go to the doctor.

Just to confirm - the family doctor ruled out Crohn's disease and Celiac disease by blood tests or perhaps stool tests? Just not sure how a family doctor could rule out Crohn's disease without someone having a colonoscopy or sigmoidoscopy. The one test that could be used is a fecal calprotectin stool test which indicates whether there is active gut inflammation.

Stomach ulcers could definitely cause pain; however, you can generally rule those out by a blood test looking for the specific type of bacteria that usually causes them.

The correct diagnosis is kind of key especially if this is an organic cause like an infection or a mechanical causes like gallbladder or pancreas not working right.

It sounds like pain is the #1 symptom that he needs some relief from. There are unfortunately few options for IBS-D; however, the medication Viberzi helps with diarrhea and pain. I'd say it was better helping with diarrhea than pain. You should really have a gallbladder to take Viberz, ie: it hasn't been removed. The other option is Lotronex. That's approved for use in women, but it works just as well in men. There is just limited data to support that. Your doctor would have to be familiar with Lotronex if they were to prescribe it as well as the risks prescribing it. If they weren't comfortable with that than using Ondansetron 4-8 mg per day could also be tried. Both Lotronex and Ondansetron can be very constipating so you have to be careful with either. Ondansetron can also be a problem if someone has a heart condition. The doctor would understand this as ondansetron is frequently prescribed for nausea for cancer patients. It's use off-label for IBS-D is new and your family doctor may not have heard about that. If you search on the TRITON research study in UK, it explains how it is used.

If this is actually Bile Acid Diarrhea than trying the medication Cholestyramine may help with that. It's a powder you mix with liquid and drink once daily. It will help with diarrhea and if the pain is from the diarrhea - it will likely help with the pain.

Long term, if this is IBS-D, then considering a low dose of a central neuromodulator (formerly called antidepressants) like Amitriptyline at around 50mg daily could help with pain and diarrhea. It takes many weeks for it to work. You start at 10 mg daily in the evening and add 10 mg every 2 weeks until you are up to 50 mg daily. In all it would take about 9-12 weeks to notice its effect. The side effects are sleepiness, dry mouth and constipation. The sleepiness generally goes away after about 4-5 weeks.

I've given you a lot of information. It might be best for you to research it and then have him speak to the family doctor about what they feel is the right option to try while you are waiting to be seen by a specialist.

Please let me know if you have any questions.

[Lauren Todd]

Thank you for filling in more details. I understand the reluctance of people about not wanting to go to the doctor.
Just to confirm - the family doctor ruled out Crohn's disease and Celiac disease by blood tests or perhaps stool tests? Just not sure how a family doctor could rule out Crohn's disease without someone having a colonoscopy or sigmoidoscopy. The one test that could be used is a fecal calprotectin stool test which indicates whether there is active gut inflammation.
Stomach ulcers could definitely cause pain; however, you can generally rule those out by a blood test looking for the specific type of bacteria that usually causes them.
The correct diagnosis is kind of key especially if this is an organic cause like an infection or a mechanical causes like gallbladder or pancreas not working right.
It sounds like pain is the #1 symptom that he needs some relief from. There are unfortunately few options for IBS-D; however, the medication Viberzi helps with diarrhea and pain. I'd say it was better helping with diarrhea than pain. You should really have a gallbladder to take Viberz, ie: it hasn't been removed. The other option is Lotronex. That's approved for use in women, but it works just as well in men. There is just limited data to support that. Your doctor would have to be familiar with Lotronex if they were to prescribe it as well as the risks prescribing it. If they weren't comfortable with that than using Ondansetron 4-8 mg per day could also be tried. Both Lotronex and Ondansetron can be very constipating so you have to be careful with either. Ondansetron can also be a problem if someone has a heart condition. The doctor would understand this as ondansetron is frequently prescribed for nausea for cancer patients. It's use off-label for IBS-D is new and your family doctor may not have heard about that. If you search on the TRITON research study in UK, it explains how it is used.
If this is actually Bile Acid Diarrhea than trying the medication Cholestyramine may help with that. It's a powder you mix with liquid and drink once daily. It will help with diarrhea and if the pain is from the diarrhea - it will likely help with the pain.
Long term, if this is IBS-D, then considering a low dose of a central neuromodulator (formerly called antidepressants) like Amitriptyline at around 50mg daily could help with pain and diarrhea. It takes many weeks for it to work. You start at 10 mg daily in the evening and add 10 mg every 2 weeks until you are up to 50 mg daily. In all it would take about 9-12 weeks to notice its effect. The side effects are sleepiness, dry mouth and constipation. The sleepiness generally goes away after about 4-5 weeks.
I've given you a lot of information. It might be best for you to research it and then have him speak to the family doctor about what they feel is the right option to try while you are waiting to be seen by a specialist.
Please let me know if you have any questions.

Jeffrey, I can not thank you enough for all of the information you have provided me with. I will spend majority of tomorrow researching each of these options to see which could be best for him. I am not sure which tests the family doctor used to rule out crohns or celiac disease so I will have to double check that. If he did not perform any of the tests you mentioned above and just ruled them out based on opinion I will request the gastroenterologist to run those tests to be safe. Again, thank you so much for your help in this topic, I was feeling very hopeless until talking to you. It seems like you may have opened a lot of different doors to him living a better daily life!!


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[Jeffrey Roberts]

Glad you have some new ideas to consider.

A gastroenterologist will generally know what questions to ask to help them decide what needs to be ruled out, though it's good to be informed and knowledgeable going into that appointment.

I hope things improve.

Jeff

[VickiRodman]

I have been to a Gastroenterologist and had all the tests to rule out anything more serious.

 I took a food sensitivity test and had to rule out Gluten, watch sugar and dairy. Not having gluten helped for awhile by the diarrhea is back. Now they are saying Imodium for diarrhea then I get constipated and they say Miralax for constipation. So it seems I am either taking one or the other.

I agree with Lauren, I need help!!!!

 

[Patty webber]

Lauren I am responding because I went thru the same thing starting in my 20’s and I’m 59 now and living with it under control. I had everything done under the sun with no relief. I was so frustrated and didn’t want to leave the house. A friend of mine told me to read a forum where people had found relief. It was Amitriptilyne I went to my dr and asked to try it. He laughed and told me it wouldn’t work. And I got back to my life. I call it my miracle. Now I do have to stay away from trigger foods that I know will give me diarrhea. It took a while to figure those out. The longer I was on it the more I could eat. I also found out just a few years ago I have ulcers. So no alcohol, fatty foods for me. Or foods with high amounts of msg in it. Like Chinese or pizza sauce. I’m sending a big hug for you both. I hope the best. Also Amitritlyne is strong. I’m only taking 10 mg anything more than that constipates me. Best thing to do is start low and work up. Also white rice calms the stomach when he’s having trouble. I lived on it a long time. 

[ChaseTheRabbit]

I feel so bad for your boyfriend. Sounds like me when I was in my 20's. What finally worked for me was a combination of the prescriptions Lomotil (like imodium, but better) and Viberzi (stomach pain/cramping meds).  Life changing for me. Praying this might just work for your bf....... And most importantly: If he ever has to go on any pain meds and he's taking the Lomotil & Viberzi, it WILL constipate him, so be real careful! I've ended up in the ER for this! Always something!! Good Luck!!! 

Edited February 21 by ChaseTheRabbit
Needed to add something!

[Aloha]

I might sound stupid or  but besides  all the tests and medications suggested by others, I will say that if possible try the alternative therapy like - yoga and ayurvedic treatments if that is available at your location. There are certain procedures which comes under naturopathy that I experienced to be quite effective myself. I myself struggled with IBS - M for several years and now its quite controlled. BTW I today only found this wonderful forum and received few tips too.