Another Colonoscopy For Me

[tommy]

Results next Tuesday

Yes, I'm resting. Work is slow, so I'm taking advantage of it . I seem to need a lot of sleep. My belly still grumbles alot. The nurse says that all the air should be gone, so it just could be a reaction to medicine. Of course, I stress that this is the Crohn's at work.

Donna......Praying for your results.

 

[Christina L]

Tom,

Tom,

I know they say that Crohn's Disease is noncurable, but I hope that you will search out some alternative medicine. I believe we can heal ourselves of almost anything if we put our minds to it.

Irritable bowel disease, Crohn's, interstitial cystitis - are all a part of what is called "leaky gut" syndrome. There is all sorts of literature on this subject. Without proper digestion of our food, we are not assimilating the nutrients from our food that we need to thrive and be well.

I take something called Primal Defense - it is a probiotic formula. The Chinese believe the "gut" is the root of all disease. I was having bladder problems when I discovered this fact - I started taking Primal Defense and watching what I eat. It has made such a difference in my irritable bowel and my irritable bladder.

Also, food allergies (as you know with dairy products) are a huge culprit in IBS, etc. If you eliminate the food allergens and slowly reintroduce them back after several months of bowel rest, you might be okay reintroducing some foods back into your diet. Again, lots of literature in the bookstores and on the web on this subject.

I'm just very glad that they found nothing worse on your colonoscopy. This IS treatable and you can live with it! You are a positive, upbeat kind of guy -you aren't going to let this stop you!!

Christina L.

 

[tommy]

Christina,

Thanks for the tips. It looks like I will need to be very disciplined in what I eat. Oddly, it looks like I will need to moderate or avoid the very things that we have been taught to eat...fruits, fiber and the like.

The use of alternative approaches seems to show up a lot for IBD. I guess when you don't know what causes it and conventional medicine has no cure, and because verybody seems to react differently, people are willing to try anything reasonable and non-damaging.

I'm taking this all in, waiting for a firm diagnosis on Tuesday.

In the meantime, I'm having some bleeding "back there". It isn't real bad. My GE is out of the country, so I talked to his partner yesterday. He said that as long as the bleeding isn't severe, I just need to rest and be patient.

The trouble is, that from previous Lovenox bridges, I seem to bleed more on Lovenox than on Coumadin. This is anectodal and the GE's don't agree with me. But for sure, I bleed most when taking both drugs just before dropping the Lovenox. So, I'm not in a postion to migrate back to Coumadin until the bleedin stops. Catch 22! I'm going to see if my cardio is willing to recue the Lovenox dose.

I'm also going to start another thread about Lovenox doses.

 

[djacq]

Glad to hear you are holding up under the pressure of the waiting game.

You are sooo right about the Lovenox Coumadin causing increased bleedding as far as I am concerned.

I am bruised from one end to the other, huge hematoma at the site of the procedure. I cannot sleep or move without terrible pain at the site.

I will be very intersted in a Bridge thread because I think I am in for more surg. The preliminary bx indicates it is not cancer but something that will need surg. Also will know more next week.

I am sorry to hear of you complication and hope you are better soon and this is all behind you.

Continued prayers, hopeful thoughts and no bleeding,
Donna

 

[Guest]

This is the description that I use in my clinic.

You can lose about two pints of blood before you get into trouble. Two pints is a quart. Imagine a quart of milk or a quart of oil spilled on the floor. Now clean it up using Kleenex or toilet paper. Nobody is going to allow that amount of blood to come out without doing something. You can also take comfort in that what seems like a lot of blood is probably a few tablespoonsful (unless it is flowing really fast) and will never approach the quart level.

 

[Christina L]

Donna and Tom -

Donna and Tom -

First off, Donna, I am glad that your testing did not show cancer. That is great news. I am a medical transcriptionist - work at home - and it is unbelievable all the different diagnoses of medical conditions that I transcribe. Our bodies are very complex. I hope all will work out well for you and I'm sure it will.

Tom,

When I had my bladder problems (which I think was a mild case of interstitial cystitis) I read up on it and the doctors say it is not curable and don't know what causes it, BUT alternative/Eastern medicine says it is caused by the "leaky gut syndrome." I had had years of taking antibiotics off and on because of my MVP/SBE and drinking wine, which upset the balance in my bowels of good bacteria versus bad bacteria. I have cut back on wine majorly which is okay (sigh) and also watch my intake of sugar and refined flour and take probiotics. All I can say is that if you want, you should read up on this issue of leaky gut. Also the Primal Defense - if I am correct, it was formulated by a man who had Crohn's Disease and "healed" himself through correct eating.

I have a hard time with doctors telling patients not to eat fiber such as fruit and whole grains - I have always believed that whatever God put on this green earth, that is what we are to eat. It is the processed foods and white sugar that get us into trouble. Of course, God put sugarcane on the planet, but he didn't want us to refine it.

The reason these foods are irritating your bowel (and my bladder) is because of the leaky gut. When this is healed, all else should fall into place and you would be able to eat fruits, vegetables, seeds, etc. - all that God has provided for us.

I hope that you will get a good diagnosis and then you can springboard from there!! Good luck. Again, I know you will be fine. You are not one to sit back and let life "happen" to you.

As for the Lovenox and Coumadin, I am not too experienced in those medications "yet" and hope I never will have to be, but I am learning a lot from reading the posts on the board regarding this issue.

Have a great weekend, Tom!

Christina L.

 

[Guest]

Christina,
I am curious about where corn and soy products fall in this diet. For the last 20 years or so about 99% of these crops have been genetically modified. About the only corn product that is not genetically modified is Corn Nuts - the salty snack that has kernels of all different sizes.

 

[Christina L]

Hi Al,

Hi Al,

I am no expert by any means on this issue of leaky gut, but I do know that a lot of people are allergic to soy and corn anyway, and that when it comes to healing leaky gut because of food allergies, a person needs to stay away from these things for a time. Brown rice is your best bet and also grainy breads that have a bite to them (although many people are allergic to wheat!) with whole grains in them and seeds and nuts. Brown rice and millet, spelt - these are very easy-on-the bowel grains.

I think Dr. Andrew Weil is brilliant when it comes to health issues and has a lot to say about how we should eat - he believes in the Mediterranean (sp?) diet of fruits, vegetables, olive oil, a litttle wine, and whole grains, etc. He has a web site if a person would want to read more about his way of thinking.

I truly do not know what genetically altered foods are all about and what they will do to us in the long run. Can you fill me in on that one? Thanks!

Christina L.

 

[Guest]

As far as I know, they cut costs and increase yields. My high school classmates say that they are getting the same price for a bushel of corn that they were in the 1950s. The only way that they make money is by spending less to produce more.

I have never heard of any proven ill effect from eating a genetically modified food. But I've never heard of any study that showed that they were safe either. I'm trying to figure it all out.

 

[Nan]

Tom, I congratulate you on your persistence in handling the coumadin and the bridging the way you did! Fortunately you have docs who cooperate with you (and each other). And although I am sorry you may be dealing with Crohns, it is better than some of the alternatives!
Will look forward to more information from you on bridging!

Good luck!

 

[tommy]

Wow, I appreciate your responses.

Donna, so you have a good/bad news result too! Prayers are with you. You can be certain that I'll keep you (and everyone) posted on my bridge saga. It'll be a challenge 'cause I'm so bashinful about posting.

Christina, I think you hit the nail on the head, that during a flare up, it is good to avoid foods that have rough texture and/or certain chemical compositions. I'm thinking that corn and pineapple, for example, should be avoided for now. But in remission, any foods are "on the table" (pun intented).

I think my challenge is that I'm coming off the cleansing with the ulcers and the snips that are sensitive.

Al, when I spoke to the GE yesterday, he helped me quantify blood loss. He ask you "are you bleeding alot?". So I respond by asking "how much is alot?" When we quantified it in tablespoons rather than cups, he told me to rest, be patient, and go back to clear liquid diet, just in case. I think the liquid diet also helps avoid irritation as well.

So far no bleeding today. No movements either. The belly growling is much less. Hooray!

My GE's nurse is running down the on-call GE to confirm my Coumadin re-start strategy. My GE is out of the country. His partner (the one I talked to yesterday) is off work today. I'm glad the nurse is there so she can explain to the 3rd stringer what has been going on. Remember that this nurse used to be my Coumadin nurse at my cardio's office. BTW the on-call GE is .......drum roll.....Dr. Brown.

Y'all have a great day.

 

[tommy]

My orders are to restart Coumadin after the bleeding stops. As of this morning, I was still oozing. So I'll wait another day. I'm staying on a liquid diet just in case they need to go back in, also believe that it will cause less abrasion where the bleeder is. That means that my trips to satnd in the bathroom are frequent, but the trips to sit are at most once per day.

So much for Easter dinner. At least I can eat the mint jelly. I need to invent a few more flavors of jello and soup broth.

I don't dare restart Coumadin until the bleeding stops. Historically, my worst bleeding is during the ramp up stage.

I'm guessing that if there is no change by Monday, that they will go back in to cauterize it again.

Wishing y'all a blessed Easter. I pray His blessing on each of you.

 

[djacq]

Happy Easter Tom,

You must be a very strong man going through this crisis on liquids no less!

One of my clients was dx with Melanoma ("the worse kind") and was having a Cat Scan Friday with a Pet Scan to follow. I thought a Pet Scan measured body chemicals etc. I can remember when there was just one in NE.

I used some of your positive history to buoy his spirits.

I totally agree that the ramping back on on Coumadin is the most difficult part. I had to see a surgeon Friday to try to aspirate the hematoma which was unbearably painful. I just wanted the breast off and I was sure it was going to burst anyway! They compressed it which did relieve some of the pain and gave me Vicodin so I did get some sleep.

Of course, it couldn't be aspirated.

I came off the Lovenox Wed when my INR was 1.6. Too low I thought.

You are still on Lovenox? Any conclusions from this regarding Lovenox Bridge? What is the alternative to staus post bleeding?

I will talk to my cardio Mon as I still have to have surg and will need another bridge, this will be another opinion on bridging.

It makes me concerned as how people on coumadin have major surgery.

Well, it is Easter and a new beginning. I hope things turn toward the best for you and you can get off that liquid diet.

Donna

 

[tommy]

Donna,

I'm glad we and others can support each other. Me strong? Not really. Just doing what needs to be done. I cheated last night with a bowl of tomato soup. Yes, being melanoma-free for 2 1/2 years and counting is fodder for cheer.

Sorry about your pain. What is the next step for you?

The PET scan attaches radioactivity to glucose. When the solution is dispersed in the body, the sugar (with it's piggyback) attaches to inflammmations, metastases, etc. The radiation shows up on the screen.

Well, the amount of my bleeding has not changed - very noticable, but little volume. This morning, I passed a bunch of clots . That is new and undesirable deterioration. I had some lengthy phone calls with the GE on call and the cardiologist on call. I uploaded the history and told them I'm in a pickle.

The GE gave me a lot of listening and a lot of feedback, but it basically boiled down to the "standard answer". "If you have been losing blood, go to ER to check blood levels." Other than that, if they are going back in to re-cauterize, they will want a full prep (cleansing) . So I've upgraded my diet from "liquid" to "soft" . I still want to avoid abrasion in the colon. As far as blood levels, I'm fine. I have zero dizziness, no tachacardia (high heart rate). Resting rate around 60 bpm. I assume my blood pressure is fine. My wife has a cuff, just haven't bothered to check it - I'll do that later today. If I have lost significant blood, the heart rate and pressure would elevate to compensate. I'm convinced, that I'm okay, so am not going to spend Easter in the ER, without symptoms.

The cardiologist was wonderful. Again, we talked at length. The "takeaways" are as follows:

1. He believes that we sometimes take anticoagulation too far (specifically) for aortic valve patients. (I know that is blashpemy in here). He said that there are no official rules about bridge therapy. He spent a fair amount of time with me discussing all aspects of my case. He thinks that we started back on anti-coagulation too soon after the colonscopy.

2. At my prompting, he said that if I were to have a stroke , there is no real benefit to have it in the hospital than at home. Doctors would want to withhold anticoagulants until the bleeding stops . Lovely!

4. A man of my health is probably replenishing blood supplies as fast as I'm losing it (slow leak).

3. He says that Lovenox is a very powerful drug. I told him my body agrees, that from my previous "bridges" including this one, that I bleed more on Lovenox than Coumadin. Arm excision and hernia surgeries. Even today, a few scratches on my finger are swollen much worse than they would be on Coumadin . I asked him about reducing the Lovenox dose. He prefers me to hold 2 doses (24 hours) and see how it goes overnight.

So, both doctors gave me their opinions and suggestions, but the decisions are up to me. My wife and I talked it over, and this is where we are:

1. The bleeding has to stop.
2. The current anti-coagulation regimin is not working.
3. Everyone reacts differently to Coumadin and Lovenox.
4. I've been on 24 hour hiatus before without incident.
5. I'm taking my cardio's suggestion to hold Lovenox for 24 hours.
a. If the bleeding stops, I stay on soft diet and go back on Lovenox and Coumadin at the same time.
b. If the bleeding stays at the same rate, I go back on Lovenox (or check into the hospital and do heparin) until I can get the thing re-cauterized.
c. If there is improvement, but the bleeding hasn't stopped, I'll have another heart to heart (pun intended) with the docs. This time it will be with the primary guys, not the on-call guys.
d. If the bleeding gets worse, I go back in for emergency flush and cauterize.

There is risk either way. Two recent VR stories loom weigh heaivly on me. One of bleeding and one of stroke. I'm in the middle where I want to be, but still leaking.

On the lighter side, I gave up eating ice cream for lent. Doesn't ice cream fall under "soft foods"? I'm not waiting for your answer.

 

[Guest]

Bleeding always stops.

I have had three types of cancer so far. Basal cell on my hand, melanoma on my head and prostate. All seem ok as of last checkup last month.

I think that ice cream is considered liquid diet - the step between clear liquid and soft.

 

[Nancy]

Tom-

Wouldn't the fact that you are passing clots rather than frank blood be a GOOD sign that things are heading toward stopping?

I'm keeping my fingers crossed for you tonight that tomorrow, you'll not see much blood at all.

 

[Mary]

Tom,
I'm praying that you get this resolved quickly and without further discomfort. I talked to my father-in-law yesterday. He's back in the hospital with CHF complications and trying to lose an extra 14 pounds of fluid. (Nancy, I thought about you and Joe).
Jerry ended up needing 8 pints of blood after his colonoscopy, but they eventually got the bleeding stopped. They are taking him off coumadin again until they get everything straightened out. Of course, he doesn't have an artifical valve and he guesses he's been on the coumadin all this time due to the pacemaker.
Surely if he can recover from his experience, you will too. Nancy's observation that clotting might be a good sign sounds reasonable to me.
Mary

 

[Guest]

Passing clots is good. It is a step toward not passing clots or blood. It is quite possible that you will always have a small amount of blood in your stool. I have some in my urine more than one year after my prostate surgery. Not anything that is significant, just gets picked up when they do the test. The urologist says it is not important.

 

[geebee]

Tom,

I haven't chimed in because I have no experience with these kind of problems after a colonoscopy. Mine was only a problem because I found out I was allergic to Vancomycin - interesting running around by nurses on that one.

However, I am writing to tell you I am praying that the bleeding stops and all is OK. I feel badly that you are having to go through this.

 

[Guest]

Vancomycin allergy is really a rare occurrence - what happened?