Exhausted from digestive conditions

@bentley33 Hi, Bentley, and welcome to Connect. As I suspect you realize, we are all patients here, sharing information about various health problems, but without giving any real medical advice.

My question to you is, where are the doctors you have been dealing with? I live outside of Manchester, NH and had a slew of symptoms that went undiagnosed for almost a year and a half. Finally, a suggestion was made by one doctor and sure enough, that proved fruitful. It turned out I had non-alcoholic cirrhosis. With that diagnosis, I headed to Boston, and ultimately had a liver transplant. Over time I came to realize that my symptoms all pointed to cirrhosis, yet no one put the pieces together.

I know now that if I ever have a problem that is not diagnosed in a reasonable amount of time here, I will get myself down to Boston to MGH (Mass General Hospital). If you have not been to a major medical center, preferably a teaching one, then please do go to one.

I hope that some doctor will be able to put 2 and 2 together and give you the help you so badly need. You sure have been through a lot.
JK

Thank you. My GI doctor is in Omaha NE. I have been to the University of Iowa and also the Mayo Clinic in MN. That was a few years ago.
I’ve usually been able to know my body and when I have a “flare up” of whatever I’ve been able to work it out. But this is different and has been lasting for months. The bloating and bruising is new and honestly scary. I have thought of packing it up and going to a major hospital to get answers, but being a single mom who can barely make it through the day makes it tough. I will mention the diagnosis To my doctor and see what the have to say. Thank you very much for listening and the suggestion. It’s been an absolute struggle. Thank you

@bentley33 I am not suggesting that your symptoms and diagnosis are similar to mine, just that doctors outside of major medical centers sometimes just haven’t had the variety of conditions that doctors in larger medical centers have had. As I said, it could have been disastrous if I had not been diagnosed when I finally was. I am fairly good at researching things but i didn’t find anything myself that tied my symptoms together.

I really sympathize with your situation though. I am at the point where my husband and I are both retired, my son and daughter are in their 30s and on their own, so I didn’t have the obligations that it sounds as if you have. I hope you have some close friends or family close enough to be able give you the assistance that will allow to seek out medical care elsewhere, being it at Mayo or somewhere closer to where you live. It definitely sounds as if you need a top gastroenterologist. Some very reputable sources regularly do ratings of which hospitals are best for various specialities, you can try to find which are mostly rated in Gastrenology.

Please keep us updated on how you are doing. I am concerned about you.
JK

I wish I was closer to a major hospital to possibly get some answers. But I’m getting so tired of this that it may be worth it to just get on a plane and go. How do I find top GI doctors? So I can research them.
I want to be able to enjoy life. I know I’ll probably never be cured but I need relief and help getting thru these “episodes” and no one has a clue at this point because nothing is working.
I really appreciate you taking an interest, any suggestions are welcome, and the support means a lot. Thank you

@bentley33 You are welcome. I guess you just really hit a spot with me since I too went so long with no diagnosis. It's something I am very sympathetic to.
Am I correct in thinking you live in the Omaha area? If you google "top rated gastroenterology hospitals" you will get numerous sites that rate hospitals. Mayo is coincidentally right at the top. The US News site lists 50 hospitals. If one of those is reasonably close to you then I would consider going there. Looking at a map of the US, Mayo may well be your closest and best option. Other than Connect I have no connection to the Mayo Clinic, I live in NH and use Mass General, but there is no denying that Mayo is always one of the top-rated medical centers, along with Cleveland Clinic, Mass General, and Johns Hopkins.
https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
I hope you do proceed with this and get a good diagnosis and can find some help. You should not have to go through what you are going through. Keep us appraised of your progress.
JK

Hello @bentley33

I can "hear" in your words and certainly understand your frustration. You did mention going to the Mayo Clinic a few years ago. What was decided at the Mayo appointment? Have you considered going back to Mayo now that your symptoms are worse?

I'm not sure if @nancybev or @thull have responded to any of your posts yet, but they are really experienced folks with obstructions and can probably share from their own experiences.

Will you keep in touch with your progress?

I have thought about the Mayo Clinic again, but I’m just not sure what they are going to do. Last time I was there I came out with diagnosis that contradicted each other and the doctor I had had seen wasn’t very pleasant. It was after my son was born so about 10 or 11 years ago. Basically gave me diagnosises and said good luck. At the University of Iowa I had an amazing doctor who helped me thru the worst of the times and never once gave up. However he moved to Chicago to practice. I had to end up loosing my job and moving back to my hometown so I could be close to family to help with my son. And Omaha is not to far away but I have found a GI doctor that has read ALL my medical records and sticks by me. I don’t know if anyone else has the same problem I do but some doctors are just rude if it doesn’t jump out at them, that is frustrating to me.
I will look at the top hospitals and to be honest I’ve considered Boston and John H. Anything to get some relief to this new obstacle I can’t seem to figure out.
I’m greatful for your support and glad I got on this site. I have not talked to anyone else but support from one person who understands is extremely helpful. I can’t thank you enough. And I will keep you updated. On Thursday I had a very invasive and humiliating test done. Nothing I’ve been thru before and I was sure I’ve been thru it all. I have a sneaky suspicion nothing new is going to happen. And next week I take pills with markers to see how my colon is functioning. I try and stay positive for myself and my son, but this slowly started in October and blew up big time in February, so it’s getting hard to think positive. But having 3 major surgeries before age 4 and I just turned 40, it’s a little bit annoying (to say the least)
Thank you for talking and understanding. I’m very new to this but after the few that I’ve read, I feel we all need to head to Hawaii for a vacation, with doctors on call, lol.
That’s another thing. Who can plan a vacation with this stuff. I admire the people willing to give it a try. My son and I have made it on 2 vacations. Considering it’s just ya, I have to be careful, I don’t want something to happen and then he’s upset and stuck in the hospital with me. He shouldn’t have to carry my burden of health issues. He’s aware of them but I do my best to act like nothing is wrong, but this one is harder and he’s older. He said to me the other day “mom in a year I’ll have my permit so I can take you to the hospital when your sick” broke my heart. So for both of us I want to figure this out.
Sorry to ramble, it’s been a rough week.

@bentley33 At least you do have a GI doctor who you feel good about. Having a caring doctor is such a huge relief.

The advantage of a Mayo is that they do have reasonably priced places for out of town patients to stay at. I don't think there is anything like that at MGH or the other Boston hospitals. That sure makes it easier for patients who come a distance.

I can well imagine your frustration. I am going through some digestive issues right now myself but there does not seem to be a good answer to them.

Regarding vacations, when I had cirrhosis and was waiting for a liver we considered traveling, but we knew what we were dealing with. We ended up not going away, I was too afraid of landing in a hospital other than MGH. Our favorite travel buddies made a couple of trips to Europe and we would have loved to have joined them for one of the trips, but being in a hospital where I couldn't speak the language would have been even worse than just plain being in a hospital.

Your son sounds like a really good guy. My son is the same way, but he's older, in his 30s now. I think he may have been as good in HS though, particularly if his father was not around. Kids can be amazingly caring about their parents.
JK

I’m not writing to give advice, as I am in the same boat as most on this site, but what I can do is commiserate and tell what I’ve tried and what I’m still trying.

Surgeries: Appendix, kidney stone removal, 2 atopic pregnancies ( that’s when the fertilized egg gets caught in the fallopian tube and starts growing there. Immediate fallopian tube removal is required), c-section ( invetro twins), gall bladder removal, scar tissue removal (but as we know, it grows back twice as much when removed), and an ERCP which led to pancreatitis. I have a redundant ( tortuous) colon where a colonoscopy can’t be done and most recently, after searching years for an answer to this lower pelvic pain (keeps me up literally all night long), I was diagnosed with Pelvic Floor Dysfunction. PFD IS THIS: your pelvic floor is like a sling that holds your intestines in place, as well as your spine. The pelvic floor is also attached to your hip bones. When your pelvis is weak and starts to drop your intestines become misaligned. I’ve been told It probably began with pregnancy ( I was 110 lbs and gained 80 lbs with the twins. They are 19 now). PFD symptoms: bladder leakage ( I don’t have this),constipation, lower pelvic pain, extremely painful intercourse, unexplained back pain. I have 4/5 of the symptoms. And men can get this as well, although not as common as with women.

Between the tortuous colon, the massive amount of scar tissue, and the pelvic floor dysfunction, i have horrible back, hip, and pelvic pain, and major bathroom issues, which I’m going to call IBS because I don’t know another word to use. What I go through on a daily basis with my stomach can’t be described in words or on paper. I have eliminated most foods because eating makes things worse, I’ve lost many friends because of this, and I have tremendous guilt because my wonderful husband shouldn’t have to deal with me.

About 2 months ago I got sick. I lost 12 lbs, which put me at 93lbs. I’m 5’4”. I had to take a leave of absence from work ( going back in about 3 weeks, and with 2 kids in college it’s the worst timing ever), I’ve gone through several back epidurals, going through PT for the pelvic floor 2x a week ( It’s not your normal PT. It’s very invasive and emotional); which includes internal vaginal injections every 3 weeks. I do home exercises and stretches, acupuncture 2x a week, a psychologist 2x a week, I’m having my first nutritionist appointment today because I can’t gain any weight back and eating scares the crap out of me because I get such bad stomach pain, and I’m trying to find a psychiatrist that takes insurance because pain management ( really, and this is their job) and my internist are both uncomfortable prescribing pain pills. I take different pills at different times for different issues. There’s more, but I think my point is taken. You’re not alone.

To answer your question, yes you try everything. PT, acupuncture, whatever. This way no one can ever say “well the dr said to do this and you didn’t want to listen”. I’ve just began acupuncture. I’ve been told you will notice the effects after 2x a week for 6 weeks. I’m on week 3. Right now I believe it to be hocus pocus. People look at me like I’m crazy ( at least that’s what I think. It could all be just in my head), you’re made to think that you’re a drug seeker because you stress at the Dr’s office when they dont prescribe enough pain medication to get you through a month. Perhaps if I call them every hour on the hour during the day and especially at night due to the pain they’d understand. I’m exhausted as all of you out there, yet I have to keep smiling for the people around me because who wants to be around Debbie Downer, when in truth, I’d like to just sit in my bed, watch tv, and be left alone.

Until modern medicine is equipped to handle people with multiple issues simultaneously, physically and emotionally I personally see no way out, but it’s nice to know I’m not alone out there.

My saying is 1 step forward, 3 steps back, followed by the song “ I get knocked down, but I get up again. You’re never gonna keep me down”, by Chumbawamba. At least this makes me laugh, along with The Big Bang Theory.

@bentley33, I noticed that you mentioned that you "have found a GI doctor that has read ALL my medical records and sticks by me". I see that as a potential glimmer of hope for you. For example: I was treated by my local GI for 7+ years for a rare liver disease. He had a colleague (liver specialist) who practiced 90 miles away at a major hospital. These 2 fine gentlemen communicated via phone about my condition. I did need to drive to an appointment (90 Mi) on 2 occasions.
Do you think that such a solution is possible in your case? If you haven't done so, would you consider asking about it?

You have a beautiful son.