HealingWell
Search Close Search
☰

Horrible visit with GI doc

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/25/2010 12:36 AM (GMT 0)
I have been having severe URQ pain that radiates to my back and across my chest, plus nausea and vomiting. I have been living off of banannas, Ensure, lactaid cottage cheese and canned peaches. I cannot seem to eat anything more solid without getting excruciating pain. I have had a total obstruction before and this is not as bad, but it is close. CT Scan, HIDA scan, and Gall Bladder ultrasound have all come back normal. I went to my GI because I wanted to find some answers. I want to get rid of the pain and start eating a more normal diet. I am hungry!!!! Anyway, this dr, who is billed as one of the best GI dr's for Crohn's, gave me a prescription for Rifaximin antibiotics, asked if I wanted some pain meds, and told me I probably have a bacterial overgrowth. I was shocked. In may, after colonoscopy, he said he could not see rectal-vaginal fistula so it must be bacterial overgrowth and gave me antibiotics. I ended up going to CR surgeon who indeed confirmed I have a pretty nasty rectal vaginal fistula. Anyway, I am shocked that these dr's are willing to give me pain meds and not investigate more why I cannot eat solids or why I am so much pain. I told him I have had perforations, blockages and I know when something is not right. That I am terrified of these things happening again. He said I just have to learn to live with the pain and limited diet, that it is part of having Crohn's.  Granted, nothing shows up on the tests, but it did not either the last time this happened. After I told him that I am disappointed in him, being the best doc for Crohn's, and all he can come up with is bacterial overgrowth, he admitted I could have scar tissue crimping the intestine and causing a partial blockage. He proceded to tell me he was not willing to investigate that, that I was welcome to get a second opinion, and I would have to find a dr and convince them of my level of pain and discomfort to get a resolution (surgery if needed). He said he was not willing to have me go under the knife, but admitted that is the ONLY way to determine if scar tissue is indeed the issue. I have to find yet another doctor. Why oh why do they just want to throw pills my way? I do go into each dr appt with a notepad and question them, question why I need certain tests and meds and they seem to get an attitude each and every time! I just want to know why, what, how, and side effects, etc. I asked him about certain tests to determine a blockage and he immediately said No. Said there is no way a partial obstruction could hide on CT scan or colonoscopy, tests I have already had in May and in ER in aug. What a Jerk. i just hate starting all over again. Thank goodness I can vent here.      
Posted 9/25/2010 12:48 AM (GMT 0)
(((((((((((((((Firecracker)))))))))))))))
Posted 9/25/2010 1:07 AM (GMT 0)
You definitely need another GI opinion!!!!! There are other tests that can be done, like the pill cam swallow. You know something is terribly wrong, and that's good enough evidence to me that you need more help than what you are getting. Please do not be intimidated. You need a better doc, and do not give up until you find one! My heart goes out to you. Let us know what happens.
Posted 9/25/2010 1:28 AM (GMT 0)
Thank you, MMNAVY & gumby44. I have seen so many doctors and end up having to switch because they tell me it is all in my head. They just want to throw pills at me. This GI doc is one of the best so he is busy. I usually end up waiting for 4 hours past my appt to see him and then I only get to speak to him for 10 minutes. I am at my wits end. My GI doc before this one told me I was over reacting. I had gone to him re: rectal vaginal fistula, so I switched to this one and basically get the same response. I think if they cannot see it then they think it is all in one's head. I had one GI, when I perforated, tell me that I was depressed and proceeded to give me a prescription for prozac. He said that I wasn't eating due to depression. My primary care dr fired him and put me in the hospital where they found I had perforated. It seems like deja vu all over again. Maybe I should see my primary doc. She has no qualms about throwing me in hospital and running tests.
Posted 9/25/2010 2:12 AM (GMT 0)
firecracker: Wow! I always find it so very frustrating when medical professionals become immune to the needs and issues of their patients. So much for a lofty title of the best GI, must have gone to his head and now his brain and backside have become everted! So sorry that you had to experience medicine at its finest, hopefully you can find a partner or another GI in town who cares and is competent!
Posted 9/25/2010 2:16 AM (GMT 0)
Well, I have the best of the best- Surgeon  world reknown. Although I don't have Crohns I had to write. I have UC and had to have emergency surgery 10 years ago to have my colon removed and j-pouch. After the surgery I had terrible pain like a knife was going thru me. I was in and out of the hosptial, every test done over and over. Nothing showed up. Given pain meds go home. Read my chart-patient is over reacting. Saw 5 other doctors including a trip to Cleveland to see another world reknown surgeon. Finally, when I made an appt with another surgeon to remove my pouch did my very famous orginal surgeon decide to go in and take a look and a look he did-massive infection. Oh, I got a nice apologly for take one. Moral here-if something is not right you need to look elsewhere no matter how good a doctor you think you have.

Back to the subject-I too just recently could not eat, vomiting, pain. Was on a liguid diet for months and losing weight and not doing well at all. I was sent for a small bowel seris and it showed two areas of partial obstructions so yes they can be found. My surgeon also told me that if nothing showed up on that test and I was still not doing well then he would again go in and look around. I guess he learned his lesson from the first time.

Don't give up-it's your health.

Posted 9/25/2010 3:10 AM (GMT 0)
Sounds similar to what I went thru until I found the right adhesion surgeon. A pill cam would probably get stuck, so be careful. Adhesions.org might be a good place to check out. If you want a doc/surgeon suggestion in FL or PA let me know.
Posted 9/25/2010 7:49 AM (GMT 0)
cool  thats what i have my fist well when i try to stop fluffing it just gose throught front is that simular and iv had a resection 2wks ago welll still in hosp 4wk s now but sure this fist is holdn me back dose any fecaial mat come out frnt thats what happnd me a
Posted 9/25/2010 12:22 PM (GMT 0)
Thank you everyone for the supportive words. With these jerk dr's sometimes I start to think I the pain really is all in my head. Then I come to this forum and get so much info and support. Thank you for the adhesions.org sight. It has a wealth of info. I am in Cleveland, OH and have been going to the Cleveland Clinic. They are charging me so much money. They keep billing themselves and this dr as the best in the field. I will be making an appt with a new GI on Monday. I emailed this dr, who basically blew me off, and I fired him and told him why. I told him if I end up perforating or with emergency surgery or worse it will rest squarely on his shoulders. That he has not upheld his job or responsibilities as my GI doc.
Posted 9/25/2010 2:50 PM (GMT 0)
My daughter and also a friend of ours both went to XXX for Crohn's at Cleveland Clinic, if that's who you are talking about. Not only did he not have the answers or want to listen about the pain, but he didn't seem to care. What a disappointment.

Post Edited By Moderator (Ides) : 9/25/2010 2:01:56 PM (GMT-6)

Posted 9/25/2010 2:54 PM (GMT 0)
Mastersmom-- I was at Cleveland Clinic Digestive Diseases Institute, but different doctor than yours. This is the 2nd GI doc I have gone to at Cleveland Clinic. I think they all have the same attitude there. They always seem to cut me off and not let me finish describing my symptoms. Disappointment indeed.
Posted 9/25/2010 3:10 PM (GMT 0)
Wow I am so sorry to hear what happened to you and from some of the supposed best Crohns docs.  I agree that you need to keep fighting, no one should suffer as you are.  I hope you are able to find another doctor soon and fing out whats causing all this pain.  Big hugs to you!
Posted 9/25/2010 4:18 PM (GMT 0)
I completely agree with your opinion of the Cleveland Clinic, my doctor was supposed to be one of the best as well, and I have NOTHING nice to say about him. I saw Dr. XXX. He told me that all I had was a bacterial overgrowth, and that I was depressed. He told me I was going to be in pain for the rest of my life and I just had to deal with it. He didn't do anything for me. I wasted my time and money with him...At first I was so impressed by his credentials (all those papers and genetic research!), but now I realize that doesn't mean anything if they don't have a good bedside manner, and let me tell you- his was nonexistant.

Post Edited By Moderator (Ides) : 9/25/2010 2:02:31 PM (GMT-6)

Posted 9/25/2010 5:31 PM (GMT 0)
firecracker, based on your address (city/state) listed on HW, I had already guessed you were talking about the CC. 

I think my daughter and/or I  have run through just about every top ranked Crohn's specialist in NYC, and none of them make the cut: either too arrogant or not well informed enough (one told us, mistakenly, that worm therapy means drinking eggs every day) or not available enough, or all three. 

XXX did no tests, not even a blood test, before saying, "I see a healthy kid!" and blamed her symptoms (occasional mild cramps, LRQ pain, loud abdominal noises) on not enough fiber in her diet plus a high-achieving personality...less than a year later, she landed in the hospital ER. Another top doc flat out lied to her...she asked him, point blank, "Will this Zosyn definitely help?" and he answered, unequivocably, "Yes." Actually, it hasn't been proven to work for any Crohn's patient, which he must have known, and it made her symptoms worse plus caused an allergic reaction. Another top doc suggested surgery before she had a chance to try even milder meds like Pentasa - her stricture has since disappeared so, clearly, she didn't need surgery. This past week, we met yet another top ranked Crohn's doc who didn't really listen to her, insulted her, dissed all her previous docs, and didn't appear knowledgeable enough.   

Dr. XXX moved to Florida. So who does that leave? Right now, my daughter is looking for a knowledgeable, trustworthy, sensible, respectful, reasonably available Crohn's specialist who is also on her insurance plan...right now, open to suggestion unless anybody is recommending AAA, BBB, CCC, DDD, or EEE. I suspect the best GIs are not those who are published and/or conducting clinical trials.

Post Edited By Moderator (Ides) : 9/25/2010 2:04:22 PM (GMT-6)

Posted 9/25/2010 6:29 PM (GMT 0)
Wow, this thread is almost more depressing than the disease. Where are the good docs? Who has the ability to help a Crohn's patient manage their disease appropriately? I'm so sorry, Firecracker, that you're back to looking for a new doctor. total bummer.

I'll be making an appt with a new doctor pretty soon, and getting my 10 yr old into a pediatric GI to continue down our diagnostic path for her tummy pain. I'm not looking forward to any of it.
Posted 9/25/2010 7:07 PM (GMT 0)
Ostructions CAN hide from ct scans and coloscopies! They are not the only tests out there by any means. Please get another opinion, who cares how great this Dr is for other people. He is not the best Dr for you. I really think you would benefit from the pill cam, yes if could get stuck but then if it does, at least they'll have reeally good pictures of the trouble area (I know it won't be pleasant though). And there are other tests too- I am having a retrograde enteroclysis (sp?) monday because I have a very similar problem- constant obstructions that might be scar tissue which means another resection might be my only option for (maybe) relief. My Drs all explain why they are so hesitant to put me under the knife and of course I get it but everyone agrees that there comes a point where you can not live a quality life without more drastic measures. For me, I have have 8 hospitalizations for obstructions since June of last year so it's time- for me. If might be time for you too, at least to have some more testing done. I go to John's Hopkins by the way, also a leading Crohn's facility. If I were you I wouldn't turn down the pain meds though, you sound miserable. Please see a new Dr!
Posted 9/25/2010 7:57 PM (GMT 0)
I cannot actually say the words, but lets picture a sentence full of colorful metaphors and expletives about how messed up that seems to me.
Posted 9/25/2010 8:10 PM (GMT 0)
Before anyone gets upset that I edited their post, let me explain.

Posting negative comments about medical practioners by name can open a can of worms for this site and the poster. I understand the frustration some of you are facing in finding a physician that will work with and for you.
Posted 9/25/2010 9:07 PM (GMT 0)
<<I really feel for you firecracker >> I get 'looping' and 'kinks' in my small bowel that give me symptoms like an obstructions and which are in fact partial obstructions. A bit like when a garden hose kinks back on itself and stops the flow of water. I think I have caused them twice myself by lifting heavy furniture so am careful not to do any heavy lifting now.

They DO NOT show on CTs and can actually fully obstruct if left - hence resection surgery.

Sometimes they right themselves without intervention and sometimes they don't.

I am lucky my GI acknowledges them - wish you could use him but the travel costs might blow you budget ;P

Hope you find a good GI soon and know we are all thinking of you :)
Lesley
Posted 9/26/2010 5:45 AM (GMT 0)

<<Firecracker>> I feel your pain! I've been diagnosed with Crohn's for 26 yrs. In the U.K. Moved over here with my Navy guy. And have moved a LOT for 16 yrs, constantly having to find G.I docs I have had 3 that I have actually liked. I had a few even tell me I didn't have Crohn's (I was in remission at the time) and took me off my maintenance meds, 3 months later flared! Put me on Pentasa, I had major allergic reactions to it after he told me no-one could be allergic to it & foolish me believed him & ended up continuing the Penatasa. After about 2 weeks of misery ended up not being able to breath & also no relief for the worst Crohn's flare of my life. Caused, I believe, by him taking me off the other meds that were working very well. I had been on 6mp, I understand docs don't like those kind of meds. But I am allergic to 5ASA's & cannot handle steroids over too long of a period of time & when I come of them I flare terribly & get nasty fistula's. The 6mp helps really well with the fistula's for me. Come to find out I am allergic to sulfa, which is in Pentasa. Rare I know, but possible. Thank goodness I found a better doc in that area, but sadly for only a few months as it was time for us to move again. The doc there, Michigan, was the worst 1 to date, he proceeded to tell me I didn't have Crohn's I had IBS & took me off the 6mp again, which had started to make me feel better. Deja Vu!! To cut a long story short, he finally figure out I had Crohn's & put me back on the 6mp. Then to my despair the 6mp stopped working for whatever reason, had a nasty flare & ended up being hospitalized many times. Then I started getting this awful pain & like you I have had a blockage before so I'm familiar with the pain. And it would come & go, I pretty much got the same nastiness from him as you seem to have got from your "doc". Every test under the sun didn't show anything wrong. Well, one night had the worst pain I've ever felt in my life, hubby called ambulance. In the ER they gave me the usual pain meds & drugs that make you feel icky. Nothing worked. Nothing showed up on the CT scan ended up screaming in pain, vitals started to go crazy. Ended up having my stomach cut open from ribs to pubic bone (great scar). Had a bowel twisting that had become gangrenous causing a 100% blockage. The gangrene had started to get into my blood stream. 10 minutes later and I would have died. He had the nerve to come in t see me the day after. I did not even need the morphine for pain after what I'd gone thru for over a year & that pain was tolerable compared to the other. He said to me well it wasn't the Crohn's that caused that. Even though on the report they had found Crohn's very close to the twisting. He couldn't even imagine that he could be wrong about anything. He had a few choice words from me & out of respect for my condition, my hubby didn't hit him...lol! We moved from there & we are now in TX & hubby is retired. After the 1st doc here screwed up & tried to tell me again that I didn't have Crohn's. I didn't go back and have found the best GI doc in the world. He won me over with "I need to learn from you, nobody know's what you feel but you. Teach me" he's been my doc for 5 yrs now. I've been on Remicade (allergic). Now I'm on Humira & it has been fantastic. There are good docs out there that have compassion for us. Hope you find yours soon. Sorry so long, I'm a yapper =/. Never believe CT scans or bloodwork, they don't always show what's going on. xx

Posted 9/26/2010 1:25 PM (GMT 0)
metracy43- Wow! What a story you have. Thank you for sharing it. I have noticed if I press under my right ribcage there is severe pain. The GI did not even do a physical exam. I am so worried but have a new dr in mind to call on Monday. Only problem is he takes months to get appt with. Oh well. I will just have to be patient.
Posted 9/26/2010 2:58 PM (GMT 0)
Before my daughter got sick, we thought so highly of the medical profession. Now we are so bitter by all that has happened. I don't know how sick people are suppose to continue searching but there are caring doctors out there and when you find them, you know immediately. These doctors seem to know that you have been searching and they understand what you have been through without expressing it. They have already heard it all from previous patients. I hope you can find one soon but it may not be in your area. We are not in Cleveland but someone told me recently that they had a good experience with a GI doctor in Bay Village on Colombia Ave. but I don't have his name with me now. If you want it, I will send it to you tomorrow when I am at work.
Posted 9/26/2010 3:16 PM (GMT 0)
Mastersmom- I would greatly appreciate it if you could send the dr info to me. You can email me at [email protected]. Thank you so much.
Posted 9/26/2010 4:02 PM (GMT 0)
Firecracker ~ I can't believe this guy is so cocky that he can diagnose you without pressing under your ribs?? My doc squeezes me everytime I go. Sometimes I don't want him to, cos it can be painful afterwards...lol! That physical exam is so important. Please don't hesitate to go to the ER if you can't wait for the appt. Take it from me, I've been messed with so much with these dumb docs. I'm glad you decided to try again with someone else. Credentials obviously mean pretty much nothing. My doc isn't the best in the country, probably not in TX. But he is perfect for me. This is the longest I've been with a GI doc. Remember we know our body & even if you sound like you're a "hypochondriac" to him. You have Crohn's disease, he shouldn't make you feel like that & should check your problems. That's what you pay him for. All those other "docs" have caused me to have panic disorder. I have to take a xanax before doc appts & Lord if I have to go to the hospital it's terrible. Even if I go to take my kids (21 & 17) I panic. Which is going to be awful with my daughter (21) being pregnant & is terrified of hospitals & docs because of what she saw me go thru. So they pretty much messed up not only my life but hers too. Being pregnant she can't take a xanax, I feel so bad for her, she actually passes out in the waiting room & while we wait in the room for the doc to come in. And bloodwork is a nightmare. I'm hoping the exposure throughout her pregnancy will help her to get over some of that, because there will be a lot of appts. Anyway, rambling...lol! Good luck in your search, truly =) xx
Posted 9/26/2010 5:21 PM (GMT 0)
I've said this before and I will say it again. There is a dissolvable capsule the same size as the pill camera called the Agile Patency Capsule. For those who may be at risk of a stricture blocking passage of the pill camera they should first be given the APC one morning and 26 hours later should go in for an abdominal/pelvic xray. If the APC isn't found on xray it is safe to do the pill camera. If the APC appears on xray forget about doing the pill cam. The APC will dissolve w/in 3-4 days.
✚ New Topic ✚ Reply