Need Help

iVillage Member
Registered: 08-05-2003
Need Help
2
Mon, 01-22-2007 - 2:55am

Hi everyone. My name is Jennifer. I'm hoping someone here might have some advice. Im at the end of my rope. Let me start at the beginning. DH roger had Ruin-Y laproscopic gastric bypass in march of 2003, on the day of his surgery he weighed 360lbs. He lost most of his weight in the first year, average maintained weight of 180 since then, he quit smoking and then averaged 215. Then in febuary 2006 we moved, and he changed jobs. He started having upper abdominal pain about the same time. He took tylenol, assumed he over did it moving. When the pain wasnt going away and getting worse he finally went to the hospital. He told them about the pain, and that he has been under a lot of stress with his new job. They told him it was costial condritis. That was in april. He waited till the pain was beyond unberable because when we moved for a better job, they promised him full-time with benefits. We never got the benefits. He continued following up with the doctors, and they kept telling him that it was costial condritis or inflammation of the chest wall. They told him to take Ibprophen, even though he was not supposed to take it after gastric bypass. We were told the pain would not go away with other painkillers because he needed an anti-inflammitory. The whole time I asked the doctors about the possibilities of an ulcer, i was quickly dismissed. His pain still hadnt gotten any better. He started vomitting everything he ate, and drank, and started quickly loosing weight. Mean while he lost his job, as did I. We were working for the same company and thats a whole other story. In july he went back to the hospital. Agian no test other than a chest X-ray, this time the doctor didnt even examine him. Gave the same diagnosis, and gave him a stronger mortin.Agian I told the doctor I was concerned it was an ulcer especially with the vomitting and weight loss agian I was dismissed. That was a monday, on saturday he started throwing up blood. He was rushed to the ER at a closer hospital by ambulance. They were going to transfuse him, but were concerned that it wouldnt do any good until they could stop the bleeding. They did the EGD, and carterized the ulcer, which went from the esophoges through the stomach pouch and into the intestine. He was in the hospital from saturday until tuesday. And the doctors told us it was absolutely the worst ulcer they had ever seen. He went home on tuesday night wednesday morning started throwing up blood agian. They did anoter EGD and re-carterized the ulcer. He was discharged on tuesday. No pain meds. By tuesday he couldnt take the pain. He was still throwing up everything. By this point he was down to 145lbs. Took him back to ER, they sent him to County hospital, (we didnt have insurance) the only reason he was hospitilized at the hospital closer is because of the fact he was bleeding. Get to County hospital they sent him home, told us he would just take time to heal. We must have had 45 ER/Clinic visits. Finally by october, he was tolerating light soft bland foods and liquids. They decided he should be better and they decided to do another EGD, they told us everything was fine, there was still a little bit of an ulcer but that he should be able to eat agian soon. Right after that he stopped being able to eat anything, moderately tolderating liquids. At this point he was frustrated with the incompetence of the doctors. By thanksgiving, he could no longer toleratate liquids. His weight had dropped to 120lbs hes 6'. I took him back to the ER, at this point they recognized that he really was sick. Turns out that with the EGD they did in October they found a stricture of scar tissue, and had tried to dialate it. When they did that it just closed tigher. We were told nothing about this. He was hospitilized and put on Total IV nutrition. They put in a central catheter line, and he was supposed to be sent home on IV nutrition but he developed a horribe infection from the cental line, and they pulled it, and discontinued the IV nutrition. HE was hospitilized from thanksgiving until the day before christmas. They did approximately 4-5 EGD's 2-3 of which had dialatio with them. They went from not being able to dialate to getting it to dialate 0mm to eventually 12mm. He was finally able to tolerate liquids. His weight was up to 135lbs. He went home, but was in horrible amounts of pain. Christmas night he was re-admitted to the hospital. They did another EGD and dialated the stricture to 15mm. He was discharged the thursday after chrismas. By new Years he was in so much pain took him back to the ER, after 15 hrs in the ER they finally gave him pain meds and sent him home. After that he was able to tolerate soft bland foods in moderation. Then about a week ago, he started vomitting agian, and can no longer tolerate food. As well the vicodin is doing very little for his pain. He is scheduled to have the EGD and dialation done outpatient tomarrow morning.

I know that was really long and winded. But here are my questions,

Has anyone had a stricture post ulcer? Anything other than dialation that they did that worked for you? Did you have this problem after Gastric Bypass.

We were told that they think he might need to re-verse the gastric bypass, everything that I have read on the reversal talks about how the old stomach usally fuses with scar tissue to the kidneys liver and spleen.

Does anyone know about reversing gastric bypass, and the safety/after effect of this surgery. Gaining weight is not the worry.

Also I asked the doctors about the possibility of putting in a stint, they told me they dont consider that an option because its metal, and once it goes in its perment unless they do surgery to take it out

Has anyone had a stint put in and what was your experience?

The other thing we asked about was the possibility of resecting the section with the stricture (between the stomach pouch and the intestine in the tunnel they create with the bypass surgery. We were told they didn't know if it would be possible.

Any help and advice is welcomed. Getting a second opinion outside of the hospital is not an option, we do not have health insurance outside of the coverage we get at county hospital. Right now we have between 30,000 and 50,000 in medical bills from this. We have probably seen 20+ different doctors at this point. We havent gotten any striaght answers and have had a host of other problems with the doctors and other members of the hospital staff. Thank you for your help and letting me vent.

iVillage Member
Registered: 03-04-2005
In reply to: bondgrl007_20
Mon, 01-22-2007 - 8:38am

I'm so sorry to read about the health challenges that your dh has had. Not having health insurance can affect the quality of health care available, which you are both finding out first hand. Are you able to work? I'm sure you've been taking care of your dh, but finding a job would get you that much closer to having insurance coverage and more options.


What your husband was first Dx'd with is called costochondritis, here is more about it...


http://www.mayoclinic.com/health/costochondritis/DS00626


I've dealt with this a few times myself and it is extremely painful.


Here is some info that might address your questions about reversing gastric bypass...


http://digestive.health.ivillage.com/bariatricsurgery/index.cfm


What will putting in a stint do, from what you've learned?

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iVillage Member
Registered: 08-05-2003
In reply to: bondgrl007_20
Mon, 01-22-2007 - 9:56am

Well thank you for your response. Right now I am not able to work because I have been taking care of DH. Also its a big catch 22. Right now the only health coverage he has is through the county, and if we have any income outside the few hundred he gets every month from state disability he will loose his coverage. Right now we are surviving by living with family. As soon as he gets to a point where his condition is stable enough where he will not need to go to the doctor right away, I plan on returning to work. I have to turn in bank statements and what not to them every month, and trust me they question everything. We recieved a very small monetary gift from his father for christmas in the form of a check I put into my bank account, I ended up getting a bunch of paperwork I had to fill out to justify where the money came from.

Secondly, he never had costochondritis, they had misdiagnosed his ulcer as being costochondritis. They never took the time to fully evaluate him, or the fact that I was telling them that I thought he had an ulcer. It wasnt until he was taken to a different hospital throwing up blood, and we almost lost him that it was properly diagnosed.

As the ulcer began to heal he developed a stricture in the area where they connect the stomach pouch to the intestine. The scar tissue had completely closed off his stomach. It was impossible for him to pass any food or liquid. He has lost 95lbs in the last six months. While he was hospitilized for the month between thanksgiving and new years they were doing EGD's and dialating the stricture open slowly.

On one hand most of the research shows that this is the most effective treatment for stominal strictures. But on the other hand I have doctors telling us that it is not a long term solution. And at this point it is proving not to be.

As far as the stint goes that was the next line of treatment suggested in the research I found, and really all the was recommended if the dialation didn't work. When I brought this up to the gastro Dr. he said that he didnt think it was a good idea, because it is a metal stint, it is considered perment. He said that if there were any problems they would need to do surgery to take the stint out. In therory the stint would force the stricture to stay open, and that way he could hold down food. My question for the doctor which was never answered was if they are pushing for surgery anyways, why not consider the option that would only require a much less invasive surgery if there was a problem.

It was mentioned in passing that the other option might be able to resect that section of the intestine and stomach pouch. When I asked more questions the gastro Dr. said he didn't know if it would be an option, and he wasnt comfortable discussing it further. That and theres not much stomach there to resect if they were to do it.

Since he was admitted to the hospital the internal medicine team kept pushing me to research the reversal of the gastric bypass. They do not do that type of surgery at the hospital, nor do they have a surgen on-call who handles these type of cases. Everything I have researched about the reversal surgery is that it comes with a large amount of risks. And nothing in the stricture research really talks about going that drastic to cure a stricture.

We are going to be leaving in the next few hours to have another EGD done with dialation. We are hoping to get more answers. But of course every time they do an EGD praticularly with dialation the risk of perforations increases, so we are mildly concerned about that also since I believe this will be number 8 or 9 in the last several months 6-7 in the last 2.