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Mayo in Minnesota vs Cleveland Clinic?

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Ulcerative Colitis
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Posted 5/23/2013 5:43 PM (GMT 0)
This is my first post on here, although, it has been a wonderful resource for information. My husband has been through so much over the past couple years and nothing is working! 2yrs ago he quite smoking and went into a flare. They said his smoking was probably masking the symptoms! Had a colonoscopy done at that time and was dx w UC. Since then he has been on Asacol, enemas, steroids, Remicade, Imuran (probably more that I can't think if right now). In December he got REALLY bad. He was hospitalized for a month. He missed Christmas with our 5 and 8 yr old children:( He got 5 blood transfusions and lost 40 pounds (he is a skinny guy to begin with, so he was skin and bones!). His colonoscopy shows pancolitis, entire colon affected by UC. He ended up getting cdiff, too. After being on vanco and starting Remicade things seemed to improve. He has been hospitalized 3 times in the past 5 months. He looks sick all the time. His blood pressure is about 160/100 most of the time, he is literally dripping with sweat if he exerts himself even the smallest amount, headaches, shortness of breath, diarrhea about 8-20x/day (sometimes bloody), intermittent abdominal pain, horrible urgency at times where he can't make it to the bathroom. Currently he is on max dose of Remicade max dose every 4 weeks, high dose of Imuran, 30mg prednisone (just weaned from 40mg), floraster, multivitamin, ferrous sulfate, Prilosec, Lexapro. He is only 35 and absolutely does not want surgery. He really really likes his doctor, but I think it's time to go for a second opinion. I'm looking into either the Clevland Clinic or Mayo in Minnisota. Anybody have any personal experience with either of these for UC? Do you even think it is worth a second opinion or is surgery are only option left?
Posted 5/23/2013 6:43 PM (GMT 0)
Where do you live now and what other doctor options do you have? I agree you probably need a second opinion but going to Mayo or Cleveland may not be necessary. People will probably disagree with me but the truth is there is only so much known about UC. No doctor anywhere knows what causes it and no doctor anywhere knows a cure for it (other than surgery). All any of them know is several different treatment options to treat the symptoms only and no doctor anywhere knows which treatment option will work in which individual. People would like to think Mayo and Cleveland are up on the latest but the latest really is the same with any good doctor. They don't have any magic bullets that regular doctors don't. If it ever comes down to surgery though it is helpful to go to a place such as those that specialize in that stuff and do it repeatedly. Sometimes the best option is to learn all you can and be part of the decision making process yourself instead of just relying on the doctors to doctor.
Posted 5/23/2013 7:07 PM (GMT 0)
wow... you both have been through a lot... sorry that you guys are still struggling. I quit smoking in 2007 and first had uc symptoms oct 2012. Currently in an active flare since April 20th I have lost 30lbs in the last 30 days.. I am around 125lbs now... skin and bones as you say... and slighlty enemic...I am now thinking of looking at my diet choices and making sure that I up my energy levels to do chores around the house....
Has your husband considered diet changes as part of the treatment?A second opinion may not be a bad thing... but the catch would be who you get it from.... his/her experience and results over the years.

But I wish you both the best in looking for the best treatment.
Posted 5/23/2013 8:27 PM (GMT 0)
There's no harm in seeking a second opinion. Do you live in or near a major city? I tend to agree with gary that as far as UC goes you really don't need a CC or Mayo GI. A GI who specializes in treating IBD at a major teaching hospital would be more than helpful.

That said, your husband's experience sounds VERY similar to mine. There are alternative therapies and diets that it sounds like he hasn't tried yet, but if I were him (and you) I would take this time to start warming to the idea of surgery. There are risks associated with any treatment, and they are probably greater with surgery, but there are simply no other treatments for UC with a rate of effectiveness as high as colectomy. Even prednisone doesn't work as well or as often. Depending on the center where it's performed, j-pouch satisfaction can be as high as 95%. There are many people here, on the Ostomies board, and out there in the world who have had our whole lives turned around because of surgery. If he chooses to go that path, that is when it would be an absolutely terrific idea to go to Cleveland Clinic.
Posted 5/23/2013 8:47 PM (GMT 0)
OMG he sounds like he's in the same state I was in last summer. I was determined not to have surgery so I tried one thing after another. Sodium bicarb in a glass of water reduced the bleeding a little. I did 2 fasts which just made me even thinner, I tried raw food which made my symptoms worse. I tried vegetarianism (Dr Furber),,starches Dr Macdougal then I tried the scd which got my symptoms in control enough for me to really research the problem. after about 4 months on the SCD I found a reference to FMT and Prof Borody in Aus. I was sooooo desperate I tried doing home FMT. on jan 20th I Used my healthy husband as a donor got him to poo in a plastic bag, added saline (1 tsp salt in a small bottle of drinking water warmed by leaving closed bottle in sink of warm water) I strained it through some mesh fabric from the scraps box put the filtered stuff in an enema bottle and stuck it up my bum. I repeated this for 4 days on the last day I emptied a benebiotics capsule into the bottle as well just for good luck and then I stopped doing the enemas because I felt comfortably numb inside.
I carried on eating the SCD for a few more days then tried normal food (Ice cream)with no sign of any problems. I am now 4 months on with no UC symptoms since. I now take only vitamins. D3 20,000 IU per day (I am being monitored) multivit. Niacin 2000mg/day extended release helps with depression ADD and lowers cholesterol, flax oils, fish oils carotenoids 20,000 /dayester C 6,000mg/day I have stopped taking the iron as no longer anemic.
I feel better and better each day I feel like I am rebuilding my body. I am still wheat free though I have eaten it but it seems to make my joints uncomfortable so I mostly don't eat it. I hope you find the answer I believe it lies in FMT. Donor should be healthy, not prone to taking antibiotics screen for C. Diff if poss. PLus HIV Hep B etc GOOD LUCK
Posted 5/23/2013 9:02 PM (GMT 0)
We live in Michigan (Detroit area). From all of the research I have done, it seems as though his doctor is following the typical treatment plan for UC. We want to try everything possible before surgery, although, we both agree that surgery is probably in his future at some point. If he needs surgery, I was thinking the Cleveland clinic since it is much closer for us, but his therapist insists that we go to Mayo.

As far as his diet, he is so stubborn! When he was hospitalized for a month in December, I requested to see a dietician. I was hoping they would be able to do some education regarding what tends to exacerbate UC and cause flares. The dietician basically told him that everyone is different, there is not one particular thing that bothers all patients with UC, and that he should wait until he is not in a flare to keep a food diary and try to figure out what his triggers are. Well, he has not been in remission since then (December). He tries to stay away from high fiber. He was a HUGE soda drinker prior to this UC. He has cut out soda completely. Otherwise, he doesn't follow any specific diet. I think we probably need to try something diet wise.

Another option that I have read about is the fecal transplant. He has had CDiff a few times in the past 6 months. It seems like it would be worth a try. When we asked his doctor about it last week, he said that his immune system is too compromised because of being on the Remicade and Imuran. He said it would be too dangerous right now.
Posted 5/29/2013 6:50 PM (GMT 0)
WorriedWife734- There is never any harm in getting a second opinion, and Mayo or Cleveland Clinic would certainly be a great place to get that second opinion.  We were just at the Mayo Clinic (Rochester), in March.  My son's GI doctor presented him with all the same choices that most GI's will recommend...Immuran, Remicade, and use Prednisone with an exit strategy.  My son told her of his unwillingness to try Immuran, Remicade or Humira and the doc's response was, "I don't blame you one bit.  I can't cure your UC; all I can do is prescribe these drugs that have horrible side effects."  The team at Mayo is top notch in my opinion, but at the end of the day, they didn't have anything to offer us that our local GI hadn't already suggested. 
Posted 5/29/2013 7:03 PM (GMT 0)
herbgarden, reminds me of what a doctor said to me last month in the hospital. it was after I almost died during my IVIG infusion. the doctor said "the majority of the time, it's what we are giving you that is making you sick!"

nice to meet an honest doctor haha
Posted 5/29/2013 7:13 PM (GMT 0)
Wwife

I am someone who resists surgery like your husband but honestly if I'd been through what he has I'm sure I'd have had surgery by now. He is walking the line in his condition, he's not really living, just hanging on until something happens to take the decision out of his hands, like emergency surgery with a doctor he didn't choose.

Although diet mod. gave me remission (like your DH meds did not help me) diet cannot overcome a massive flare. It takes time for diet to heal the gut, more like a rest cure. He's got a good idea to avoid lots of fiber but it's not enough.

His doctor may be right that fecal transplant could hurt him in his condition. If he manages to get better then he could try that along with diet mod.

Please at least talk to someone who has had the surgery, find out it's not as bad as all that. I've met 2 people in person who said it was the best thing they could have done and there are many here who say the same.
He needs to get his life back and be there for his family. If he thinks he'll be less of a person tell him you want him healthy and being there when your kids grow up.

I think he's too sick to be making good decisions.
Posted 5/29/2013 7:50 PM (GMT 0)
Here are some ideas to explore with your doctor. Some are experimental, but if you husband's goal it to avoid surgery for as long as possible maybe there are a few things left to try.
I don't have diet changes on this list just because I have not researched them very thoroughly. Others on this forum can tell you a lot about their experiences with changing/controlling diet.

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Has he been tested to see if he has antibodies against Remicade? If so, Humira (adalimumab), Cimzia (certolizumab pegol), or Simponi (Golimumab) could be tried. They are all TNF blockers.

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Has he been tested to see which Imuran metabolites his body is making? If he is not making enough of the immuno-suppressive metabolite, allopurinol could force a low (50mg) dose azathioprine to metabolize into the desired form - you need a doctor that understands this well to try it.

Alternatives to azathioprine as an immuno-suppressants could be methotrexate (MTX), cyclosporine, or tacrolimus.

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Natalizumab (Tysabri) is a humanized monoclonal antibody that does not work on TNF - it works in a totally different way from Remicade. This is normally only used in severe cases of crohns - for example to avoid removal of sections of the small bowel.

BUT it has a RISK of progressive multifocal leukoencephalopathy (PML), an opportunistic brain infection caused by the JC virus. The estimated prevalence of PML seen in MS patients is 1.5 cases per thousand natalizumab users. Around 20% of patients with PML die, while most of the remaining are importantly disabled.

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Vedolizumab may be approved in the next year. It works like Natalizumab but affects only the gut and had a very good safety profile in clinical trials with 3,000 patients.

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Helminth Therapy
A deliberate infestation of whipworms or hookworms, or their ova to alter how the immune system works in the gut.

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Leukocytapheresis
In leukocytapheresis (LCAP), blood is circulated outside the body and passed through a filter that traps activated leukocytes; then the blood is returned to the body.

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Low Dose Naltrexone

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Join a clinical trial. You can search for open trial here:
http://www.clinicaltrials.gov
Posted 5/29/2013 9:01 PM (GMT 0)
bananagirl: Your doctor is absolutely right!
Posted 5/30/2013 1:17 AM (GMT 0)
Well, I do go to Mayo in MN and I do agree with others - the treatment plan they will give you sounds similar to what your husband has already had.  I've had both a horrible doctor a Mayo and a good doctor, so I think just like anyplace you go it all depends on who you get rather than the actual clinic.  Back when I was diagnosed almost 20 years ago not as much was known about UC. I went to Mayo back then when no doctors seemed to know what to do, and they really were better than the rest back then. But so much more is known about UC now that I think there are alot of GIs that are up on the latest things. I've often questioned if I should just go back to my doctor in the Twin Cities but I do like my doctor at Mayo now and he is pretty willing to work with me on whatever ideas I have. He will also talk to me on the phone for a consult rather than me always going in as its about a 2 hour drive.

As far as surgery goes, my brother did have his J-pouch surgery at Mayo about 18 years ago. Back then the J-pouch was fairly new. Once again, no doctors in WI could figure out really what was wrong with him so he went to Mayo - the put him in a few studies but he still ended up getting surgery. It was an excellent place to get the surgery and if you husband ends up needing it I would recommend Mayo for that. 

Posted 5/30/2013 1:07 PM (GMT 0)
I went to Mayo in Minnesota once. I lived only an hour away and I didn't like my GI at the time. It is a very good hospital but expect extremely long waits and having to see an intern/resident before the actual gastroenterologist (I hadn't experienced that before). The gastro doc I saw barely spent any time with me and I felt he didn't provide me with any additional answers, information or a better treatment plan than my other GI so I didn't go back. They also wanted me to stay there for three days and get all this bloodwork and other stuff done over the course of three days. I couldn't take off of work that many days. I ended up finding another GI who I really liked at another hospital. However, your situation is much different than mine was...I was only mildly flaring at the time. If I was facing surgery, I would definitely go back to Mayo and see a different GI or go to Cleveland Clinic or somewhere else reputable for a second opinion. Best of luck.
Posted 5/30/2013 2:27 PM (GMT 0)
At some point your husband must ask himself what the disease is doing to the rest of his body? I was sick for 2 years, not quite as sick as your husband, but sick enough to have the toxic colon affect both my lungs and my skin. It wasn't pretty. I would also caution you to look at the effects of long term prednisone use. Long term is anything over 4 months of daily use. Once weaned one can end up with some severe permanent side effects.

I had the mindset of your husband. I would have rather died than have surgery but I did throw in the towel 12 years ago and had jpouch surgery. Best decision of my life. These past 12 years have been healthy, drug-free, and I have never missed an event or travel commitment due to my jpouch.

Sue
Posted 5/30/2013 3:18 PM (GMT 0)
I had a friend write to the cleveland Clinic and he was accepted as a patient. Ever since he has been trying to get me to go. He has nothing but great things to say about it, and he is feeling MUCH better now. He said, "I would have emptied my 401K to get some relief". There is no harm in writing them and seeing if they have something to offer you. Doesn't cost anything but time. good luck and I hope your husband starts to feel better soon.
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