Not so sure it's IBS

Posted by katiek78 @katiek78, May 1, 2020

Hello, about a year ago I began having digestive issues that came on slowly, starting with more frequent bowel movements/diarrhea, lack of appetite, chest discomfort, and nausea, but no abdominal pain. The symptoms progressed and I began to lose quite a bit of weight which was a big concern considering I've always been lean. I had every test in the book (colonoscopy/endoscopy, pill cam, ultrasound, gallbladder testing, labs, etc.) and consulted with several GI and other specialists (endocrinology and infectious disease). All came back normal. After about four months, the symptoms subsided and eventually disappeared altogether. For the next four months I was totally fine, but in February the symptoms returned and have been present again for over two months. Doctors have stopped suggesting more testing, and seem to think this is IBS. I just completed a two week FODMAP diet as proposed by my doc, but it has not helped. Any thoughts or suggestions as to what else this could be, or does this in fact sound like IBS? I am skeptical because my symptoms don't include the abdominal pain. Any thoughts are much appreciated!

@msgtrebholtz

12/30/2020: I am editing this post, and a couple after this – After reading them over I felt no need to rehash any memories about past treatment so I am deleting some comments and focusing on the positive.

I went to see a surgeon at University of Minnesota Medical Center, who was amazing. She told me exactly what was going to happen, and also broke it to me that there so little chance that a J pouch would work for me that I should just flush that thought right out of my head (I may be paraphrasing there! LOL).

She asked if I had any questions, but all I had was a request. If at all possible to do the surgery without cutting me wide open. She said she would do her best. Turns out my colon was being strangled by fat and connective tissue all the way and she ended up cutting my colon out about a 1/2" at a time. My 2 1/2 hour surgery took about 11 hours, but she kept her word and I only have a couple of small scars. She and her staff worked hard to take care of me as well as I think it could have been done.

Jump to this post

Wow
That was incredibly rude!
You did the right thing by walking out! I would of also.
My daughter would of tore him a new one and left behind me. My thing was they didn’t even discuss anything about my gastroparesis.
I was on laxatives for it and not even taking them everyday so it was a pelvic floor dysfunction for me and so recommended therapy which insurance didn’t cover. Everything that was recommended for me not covered by insurance.
First was the therapy and second was a reflux band and third was some kind of injection that I would have to do daily and expensive as hell.

REPLY
@msgtrebholtz

12/30/2020: I am editing this post, and a couple after this – After reading them over I felt no need to rehash any memories about past treatment so I am deleting some comments and focusing on the positive.

I went to see a surgeon at University of Minnesota Medical Center, who was amazing. She told me exactly what was going to happen, and also broke it to me that there so little chance that a J pouch would work for me that I should just flush that thought right out of my head (I may be paraphrasing there! LOL).

She asked if I had any questions, but all I had was a request. If at all possible to do the surgery without cutting me wide open. She said she would do her best. Turns out my colon was being strangled by fat and connective tissue all the way and she ended up cutting my colon out about a 1/2" at a time. My 2 1/2 hour surgery took about 11 hours, but she kept her word and I only have a couple of small scars. She and her staff worked hard to take care of me as well as I think it could have been done.

Jump to this post

@msgtrebholtz Jason, I'm glad that you were able to get top quality care. I also appreciate your attitude towards healing and recovery, and the support you offer to other members.

If you didn't at the time, you might consider contacting the Office of Patient Experience at Mayo Clinic to tell them about your experience. In fact, I encourage you to do so. @martft4 I might encourage you to do the same, especially if you are still receiving care at Mayo Clinic. I know this will sound glib, but the Office of Patient Experience is there for exactly these types of situations, to mediate and improve patient services and care.
Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Scottsdale or Phoenix campus 480-342-2651
Jacksonville campus 904-953-2019
Rochester, Minnesota, campus 507-284-4988
Mayo Clinic Health System (includes MN, WI and IA campuses) 844-544-0036

REPLY
@colleenyoung

@msgtrebholtz Jason, I'm glad that you were able to get top quality care. I also appreciate your attitude towards healing and recovery, and the support you offer to other members.

If you didn't at the time, you might consider contacting the Office of Patient Experience at Mayo Clinic to tell them about your experience. In fact, I encourage you to do so. @martft4 I might encourage you to do the same, especially if you are still receiving care at Mayo Clinic. I know this will sound glib, but the Office of Patient Experience is there for exactly these types of situations, to mediate and improve patient services and care.
Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Scottsdale or Phoenix campus 480-342-2651
Jacksonville campus 904-953-2019
Rochester, Minnesota, campus 507-284-4988
Mayo Clinic Health System (includes MN, WI and IA campuses) 844-544-0036

Jump to this post

Hi Colleen,

We did go see that office.

We spoke to the staff there and they suggested we stay to get all the care an follow up that was scheduled. I explained that if we were told beforehand about the extent of my visits I might consider it, but they didn't.

I also told them that I would be willing to reschedule this when I could work it out with my boss to be there that many days. In the time that it took to attempt to set these things in motion I was also working to find different arrangements, which I did. It turned out well since the U is about half as far from home and it all worked out in the end.

I do still see Dr Poterucha at Mayo Rochester and at Centracare to collect data for his PSC surveillance group / study.

REPLY
@msgtrebholtz

12/30/2020: I am editing this post, and a couple after this – After reading them over I felt no need to rehash any memories about past treatment so I am deleting some comments and focusing on the positive.

I went to see a surgeon at University of Minnesota Medical Center, who was amazing. She told me exactly what was going to happen, and also broke it to me that there so little chance that a J pouch would work for me that I should just flush that thought right out of my head (I may be paraphrasing there! LOL).

She asked if I had any questions, but all I had was a request. If at all possible to do the surgery without cutting me wide open. She said she would do her best. Turns out my colon was being strangled by fat and connective tissue all the way and she ended up cutting my colon out about a 1/2" at a time. My 2 1/2 hour surgery took about 11 hours, but she kept her word and I only have a couple of small scars. She and her staff worked hard to take care of me as well as I think it could have been done.

Jump to this post

@msgtrebholtz Hi Jason. I do not often participate in this particular subject, but please let me welcome you, albeit a bit late. I used to participate a bit here because I thought I might have IBS but it turned out to be lactose intolerance.

I am so sorry to hear about your disappointment with Mayo. Most people love it, of course, it is ranked as the #1 hospital in the country, followed in the #2 place by my hospital of choice, Mass General in Boston which I love. I live in southern NH so that made the choice very easy. I think that every hospital, no matter how good, can have a doctor or two who may not be as patient oriented as most patients would like. My doctors at MGH are all very compassionate as I am sure the majority of doctors at Mayo are also.

The important thing is that you did find a great surgeon who gave you exactly what you needed and now you are feeling much better and the IBS is behind you. I hope you continue to do well.
JK

REPLY
@msgtrebholtz

Hi Katie,
So I wanted to throw this out there that my symptoms started the same way. To this day (over 11 years) I have never had any abdominal pain, ever! I did have the other things that you had, plus some great vomiting episodes that frankly scared the crap out of my family and coworkers. This was more about a gallbladder cyst than IBS though. But, I have had all that and I did have IBS. Yes, I said DID because I now have very little of that plumbing left so the IBS is gone! LOL

I am glad you are not celiac, but I agree that it would be really good to try Gluten Free. My wife and daughter have been GF for about 4 years plus FODMAP for my wife and they are doing well. If you need any suggestions on GF products please ask as I believe I have tried them all.

I have to think it is a combination of things though. I hate to tell you that I didn't get a UC diagnosis until the third Colonoscopy. It might just be too early to see the damage. Please keep checking. If it is something intestinal you want it caught early so drug therapies or biologics can be tried.

Please keep us updated and I will help you as much as I can. I wish you great luck!!

Jump to this post

Any info on gluten free products that taste good would be welcomed. Thanks

REPLY

I’ve had diarrhea since 2000. It’s gotten progressively worse each year. I’ve read almost everything I can find on IBS-D. I then developed sensitivity to dairy. Anyway, I think I’ve finally landed on the cause for all these problems. It’s gluten. I got a test for celiac disease but it didn’t turn up celiac. More, different tests would be needed. Didn’t want to delay progress so I just stopped eating gluten. Everything improved, including significant relief from dairy. Other improvements: lost weight, better with balance, feel better and better. Don’t know what to think now. I bought Mayo’s book about celiac/gluten. Great book and knowledge. One thing I’ve learned is that dairy sensitivity is linked to gluten intolerance. So, there!

REPLY
@catstx

Any info on gluten free products that taste good would be welcomed. Thanks

Jump to this post

Hello @catstx

I see that you are looking for gluten-free foods (GF) that taste good. You are fortunate because most of the major supermarkets do carry a variety of GF products. Many are kept in the freezer section. There are many GF crackers (I especially like Van's brand). If you like to bake there are many GF baking mixes for cakes, brownies, etc. I found that GF cookies don't turn out all that well in that they don't stay crisp but fall apart easily. I must be doing something wrong!

Regarding bread, often sourdough bread can be eaten as gluten is processed differently when the bread is made.

Here is a link to Mayo Clinic article on eating GF. Perhaps this will give you some more ideas, https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/art-20048530

What have you tried so far?

REPLY
@hopeful33250

Hello @catstx

I see that you are looking for gluten-free foods (GF) that taste good. You are fortunate because most of the major supermarkets do carry a variety of GF products. Many are kept in the freezer section. There are many GF crackers (I especially like Van's brand). If you like to bake there are many GF baking mixes for cakes, brownies, etc. I found that GF cookies don't turn out all that well in that they don't stay crisp but fall apart easily. I must be doing something wrong!

Regarding bread, often sourdough bread can be eaten as gluten is processed differently when the bread is made.

Here is a link to Mayo Clinic article on eating GF. Perhaps this will give you some more ideas, https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/art-20048530

What have you tried so far?

Jump to this post

Thank you. Btw, Costco now carries a very good gf bread: SOLO. It’s especially good toasted, but better than ok plain.

REPLY
@catstx

Thank you. Btw, Costco now carries a very good gf bread: SOLO. It’s especially good toasted, but better than ok plain.

Jump to this post

I didn't know about the Costco GF SOLO bread. Thanks for that information, @catstx!

REPLY
@catstx

Any info on gluten free products that taste good would be welcomed. Thanks

Jump to this post

Cat, you may also be interested in this related discussion where members are sharing about going gluten free.
– Gluten-free diet https://connect.mayoclinic.org/discussion/gluten-free-diet/

REPLY
@hopeful33250

Hello @catstx

I see that you are looking for gluten-free foods (GF) that taste good. You are fortunate because most of the major supermarkets do carry a variety of GF products. Many are kept in the freezer section. There are many GF crackers (I especially like Van's brand). If you like to bake there are many GF baking mixes for cakes, brownies, etc. I found that GF cookies don't turn out all that well in that they don't stay crisp but fall apart easily. I must be doing something wrong!

Regarding bread, often sourdough bread can be eaten as gluten is processed differently when the bread is made.

Here is a link to Mayo Clinic article on eating GF. Perhaps this will give you some more ideas, https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/art-20048530

What have you tried so far?

Jump to this post

The America’s Gluten Free cookbook is excellent! How Can it be Gluten Free is the title of the book?

REPLY

Having a GF family member you get used to looking for GF products.
Sam’s Club also has good GF breads. VANS waffles. Kraft now has a GF Mac&Cheese- delicious.
GF pizza based on cauliflower- delicious. Lean Cuidine has a couple of GF TV dinners.
Yesterday my daughter baked a GF banana bread with GF flour. Have to say it was exceptionally good. Nothing left.
GF breadcrumbs are OK- sometimes I mix them with cornstarch.
There are GF turkey and chicken sausages, GF hams, all Boars Head products.

REPLY
Please sign in or register to post a reply.
  Request Appointment