Gasteoenterologists

[Lynda Lynda]

Are there different kinds of Gastroenterologist doctors ? Is there just your common regular Gastroenterologist and then a Gastroenterologist that specializes in different areas of your digestive system ?

 

[my little penguin]

There are different subtypes of gastroenterologist.
Some specialize in liver disorders or stomach
Some are transplant gurus
Some are inflammatory bowel disease specialists
Some are just general Gi
Ds has seen a few that specialized in inflammatory bowel disease
And one that specialized in very early onset inflammatory bowel disease (kids diagnosed before age 8)

 

[Maya142]

Yes, there are definitely different kinds. Of course, there are pediatric and adult gastroenterologists. And among those, we have seen a GI who specialized in colon cancer (who promptly referred us to someone else), a pediatric GI who specialized in celiac disease and IBD, and two adult GIs who specialize in IBD (which are the ones you want to see, if possible) and several motility GIs, who specializes in motility disorders like Gastroparesis.

I saw on another thread that your GI thinks you should go to Mayo. That is not a bad thing - a GI who encourages you to get a second opinion is a good GI. It could also mean he or she is out of his/her depth. More complex cases of Crohn's need GIs that specialize in IBD and see LOTS of IBD patients. My daughter has severe inflammatory arthritis and honestly, we have seen several rheumatologists who have referred her to someone with more experience with her disease specifically (typically rheumatologists who research the type of arthritis she has) and have experience with refractory, hard to control inflammatory arthritis. There's no point in staying with a GI who can't help you enough. And if you can figure it out with insurance, Mayo is an excellent place to go for IBD.

 

[Bufford]

The doctors like people are all different. I've had ones that take the natural path and work more with diet and natural supplements, others who are heavy into prescribing pharmaceuticals. Some who are great surgeons, and some who shy away from it. My take is to go with the one you are comfortable having to work with you to achieve and maintain remission.

 

[Lynda Lynda]

Yes, there are definitely different kinds. Of course, there are pediatric and adult gastroenterologists. And among those, we have seen a GI who specialized in colon cancer (who promptly referred us to someone else), a pediatric GI who specialized in celiac disease and IBD, and two adult GIs who specialize in IBD (which are the ones you want to see, if possible) and several motility GIs, who specializes in motility disorders like Gastroparesis.

I saw on another thread that your GI thinks you should go to Mayo. That is not a bad thing - a GI who encourages you to get a second opinion is a good GI. It could also mean he or she is out of his/her depth. More complex cases of Crohn's need GIs that specialize in IBD and see LOTS of IBD patients. My daughter has severe inflammatory arthritis and honestly, we have seen several rheumatologists who have referred her to someone with more experience with her disease specifically (typically rheumatologists who research the type of arthritis she has) and have experience with refractory, hard to control inflammatory arthritis. There's no point in staying with a GI who can't help you enough. And if you can figure it out with insurance, Mayo is an excellent place to go for IBD.

I was only diagnosed with Crohn's 5 years ago by my current GI. I've had all of the normal testing done, such as colonoscopies, CT scans, stool samples, blood samples, etc, along the way. My treatment plans are pretty basic, but on par ( as far as I can tell.) My GI started with Humira and 6mp. After 3 years I had a flare. GI switched it up to Stelara, Budesonide, MTX and folic acid. The NP at my GI office took me off my Budesonide in March 2023 and I was sick for over a month and recently ended up in the Hospital. I had a CT scan at the Hospital, basically it says Crohn's in the terminal Ileum, which I already knew. The hospital started me on Prednisone. It's normal to have testing along the way and blood draws and stool samples. It's normal to change treatment plans when the first one didn't work. I've recently had my calprotectin checked and my Stelara levels checked. My regular 3 month visit is in a month. The only question I will have for my GI next month is why he feels I should go to the Mayo Clinic. Of course I am feeling better right now because of the Prednisone, but by the end of this month I will be back on my 9mg of Budesonide a day.

 

[Maya142]

The only question I will have for my GI next month is why he feels I should go to the Mayo Clinic. Of course I am feeling better right now because of the Prednisone, but by the end of this month I will be back on my 9mg of Budesonide a day.

But you can't be on Entocort forever. Yes, less is absorbed systemically, but it's still a steroid. You still risk adrenal insufficiency, which can be fatal. My daughter got that after a year of Entocort and then a Prednisone taper - very similar to your situation. Her ACTH and cortisol levels were so low that ACTH was not detected and cortisol was dangerously low. She had several very scary adrenal crises and had to be rushed to the hospital for hydrocortisone. She also had osteopenia. You could develop osteoporosis, avascular necrosis, diabetes, Cushing's syndrome etc.

So your GI has to come up with a plan if you're steroid dependent. He may just want someone with a fresh set of eyes to evaluate you. Or he may feel that Mayo can help you more. I'm not saying he hasn't helped you and you're right that he has done many things right. But he may just want another opinion. It's honestly a sign of a great doctor! And it's very possible he just wants you to see them for a second opinion and not to transfer care.

You could try increasing Stelara - you may need higher levels that the average person for whatever reason (my daughter always needs really high doses of biologics) and so may need more frequent injections - many people seem to need it every 4 weeks instead of every 8, though it's always a fight with insurance. Or you could try upping MTX. Or you may need a different biologic altogether.

 

[Lynda Lynda]

@Maya142 I am getting my Stelara free through a program Janssen has. As far as I know I qualify until the end of this year ? Before that my Stelara was funded by Johnson & Johnson Patient Assistance Program. [ And before that it was Humira injection pens for 3 years free through a patient assistance Foundation.] Right now my GI doctor is going through the process of requesting my Stelara every 6 weeks for me. I already have osteoporosis and osteopenia. I see my Endocrinologist in July and I have already sent her a portal message that says I would like to discuss secondary adrenal insufficiency with her during my next visit. My Endocrinologist monitors my hypothyroidism, thyroid nodules and my bones ( DEXA scans done regularly. ) I have had 4 Reclast infusions for my bones over the last several years. My Endocrinologist was not happy with my last bone scan. I have been seeing her for probably 20 years. In 2021 I think my Health Insurance Company did cover Stelara at a $3,000 co-pay per pre-filled injection pen, of course I don't have $3,000. Really, I am just trying to keep a roof over my head by renting a room in someone's house because apartments are not affordable. Trying to keep my 20 year old vehicle running. And my bank keeps raising my Charge Card interest rate and that brings up my blood pressure. Now I have to pay for an ambulance ride and a 2 day hospital stay.

My sister does help me every month with some money, but I feel that I have been a burden to her for so long that it's embarrassing. At one time I was smart and had a great job. Was independent and self-sufficient. I was a hard worker and proud of my life. I have been physically sick for 27 years and mentally sick for 17 years. I'm 62 years old and my sister is 73 years old. She has really bad RA and an unruptured brain aneurysm. My parents are dead. I'm tired and depressed. I will take a posting break, I have all the answers from my most recent questions here and now the next people to talk to are my doctors .....if they have the time to talk to me.

 

[Carabop1]

When you get the ambulance and hospital bill call them and tell them you need financial assistance.

 

[Lynda Lynda]

When you get the ambulance and hospital bill call them and tell them you need financial assistance.

I will definitely do that.

 

[Delta_hippo]

Sorry to read you have been having such a hard time Lynda hope the doctors can give you some good advice and help. Hope there are good things around the corner for you.