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Crohn's Disease
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Posted 5/30/2012 12:00 AM (GMT 0)
I had a colonoscopy on May 17, which showed rectal inflammation. The doctor told me that based on what he saw, he thought I either have Crohn's or UC. He wasn't able to reach to Terminal Ileum because I was in too much pain.

Fast forward to today, and my biopsies came back. My doctor, who was not the doctor who performed the scope, said the results were unremarkable. This is what the report said:

Rare lymphocytes involve the surface epithelium in the biopsy from the cecum, but there is insufficient surface epithelial lymphocytosis to suggest microscopic colitis. There is no significant acute inflammation or surface epithelial lymphocytosis in any of the other biopsies.

I believe that I have IBD, based on the fact that I have bloody stool, severe abdominal pain, diarrhea, anal itching, bleeding, fissures, and a skin tag, joint pain, skin rashes, severe iron deficiency, and vitamin D deficiency. I have also been on TPN (IV Nutrition) for the past 5 years because I dropped to 105 pounds due to the severity of my symptoms.

I'm at a loss about what to do going forward. I've been trying to get a diagnosis for 8 years now, and I really thought this was going to be it after the colonoscopy. I can't say that I didn't have a good doctor, because he is a world-renowned gastroenterologist. I just don't understand how the doctor who scoped me was so sure about IBD, and my doctor dismissed IBD based on the biopsies.

Is visual inflammation not enough? I know that they are looking for specific things with Crohn's on the biopsy, but I thought that was different with UC. I just can't continue on in the condition that I'm in. I need answers, and at this point I don't know where to turn. At least if I had a diagnosis, I could get treatment.

I'm sorry this is so long, but if anyone has any thoughts, ideas, or answers to my questions, I'd be really interested. Has anyone else been in this situation before being diagnosed? Thanks so much.

Brian
Posted 5/30/2012 12:05 AM (GMT 0)
wow Brian! I don't understand docs either.. unless they have in your face proof, they seem to ignore it regardless of how it is affecting us. Surely they admit something is wrong for them to have you on TPN?? that's pretty serious isn't it? What did your previous scopes say?

HUGS
Posted 5/30/2012 2:19 AM (GMT 0)
Hi Leebie,

Thanks for the reply. You're right, it is definitely serious for me to be on TPN. I had a PICC line infection that put me in the hospital for 5 days after I developed a fever of 104.3. Long term TPN can destroy the liver. Unfortunately, they would rather just tell me how important it is for me to get off of TPN, but not offer treatment to help me get there. I just don't understand why they won't do anything unless the biopsy is 100% conclusive. I really thought the visual rectal inflammation would be enough to diagnose some form of IBD.

I had one previous colonoscopy 5 years ago, which was normal. All of my endoscopies except the last one have shown gastritis, and one showed duodenal erosion. I just wonder if my scopes would be different if I wasn't on TPN, since TPN allows the gut to heal. It's just so frustrating. Thanks again.

Brian
Posted 5/30/2012 2:52 AM (GMT 0)
how come you had a picc line and tpn? (if you don't mind me asking :-s) I am shocked that they'd give/do those to you without a diagnosis! I don't know much about TPN but don't you have to be in hospital for that because it's IV?

I'm having a little of the same problem.. CTE showed inflammation in the ileum extending to the TI with enlarged lymph nodes along the iliac chain but scopes have been clear so despite my symptoms being consistent with crohns they are having me do a pillcam but they don't think it will show anything (although a few people have said they've had crohns show on pillcam when it didn't show on scans etc) I am desperate for some treatment instead of plying me with morphine and having constant hospital trips for IV pain killers :-s It doesn't make sense to me not to treat on clinical signs/symptoms alone when it's causing so many symptoms & much pain
Posted 5/30/2012 2:58 AM (GMT 0)
Hey Brian. I live in charlotte but traveled to Chapel Hill to see Dr Scott Plevey with UNC medical. he does crohn's research. Not sure who you have seen, but i really liked him and his approach. while his treatment plan (added methotrexate to my remicade) did not rally work, it did make me feel better that we (mt charlotte gastro and I were doing all the right things. Maybe you did see him..not sure...but thought I would ask since we are realtively close to each other.
Posted 5/30/2012 7:17 AM (GMT 0)
Leebie,

I'm so sorry to hear that you are in the same predicament as I am. It is so frustrating to have some tests show up as positive, but not the "right" ones for the doctor to diagnose you. It's terrible that you constantly have to go to the ER to get some relief for your pain. You just might have some luck with the pill cam. I read a medical journal article about pill cams. It said that the pill cam was able to show severe inflammation in patients who were otherwise negative for Crohn's on scopes and CT. That's what I'm hoping for in my case as well. I'm going to make an appointment with a local GI who does the pill cam, and hope for some answers.

I was put on TPN because I was hospitalized when I became too ill to adequately nourish myself. I wasted away, all the way down to 105 pounds. At 5'10", I looked like I was dying, and felt like it too. They put me on TPN to rest my gut and bring my weight back up to a healthier level. While I was in the hospital they ran a battery of tests, which all came out negative. The TPN was meant to be a short-term treatment, but they couldn't find a reason for my symptoms, so it has carried on for 5 years. I've seen many GI's, but none of them were helpful. I thought this last one might have been on the right track, and that I'd get some treatment for IBD, but he was no different than the rest of them.

I actually do my TPN at home every day. They send a week's worth of IV bags, and I hook it up every day to a pump. The pump infuses the TPN over 12 hours, so I do it at night. It all fits into a special backpack so that I can walk around freely. During the day, I'm free to do whatever I want. It's actually pretty convenient.

I hope we're both able to find some answers with the pill cam. Maybe then we'll be able to get some long-overdue treatment.

Brian
Posted 5/30/2012 7:36 AM (GMT 0)
Hi mirowpl,

I'm actually surprised to hear that you had such a good experience with Dr. Plevy. I saw him about 2 years ago, and thought he was terrible. He wanted to diagnose me with IBS without running a single test. His "treatment plan" was to send me to the in-house GI psychologist. I couldn't believe that he would try to do that without doing so much as a simple blood test. Needless to say, I never went back.

However, he is an IBD specialist, so he may be decent if you have already been diagnosed and are in need of treatment.

Either way, I appreciate it, and I wish you the best with your treatment.

Brian
Posted 5/30/2012 8:46 AM (GMT 0)
hear hear! fingers crossed for us both :-)

My now 14 yr old had a gorgeous wee backpack to carry his 'food' around in between the ages of 1 & 4.. he had a gastrostomy and was connected to feeding pump too ..
Posted 5/31/2012 12:01 AM (GMT 0)
Amen to that! I hope your son is doing better now. Keep me posted on your results from the pill cam.

Take care,

Brian
Posted 5/31/2012 12:22 AM (GMT 0)
mm not so good.. he's having a gastroscopy next thursday.. he has bowel issues too but because the stomach issues are confirmed that's what they seem to concentrate on :-(
Posted 5/31/2012 11:05 AM (GMT 0)
thnaks Raleigh. My GI in charlotte sends all his difficult patients to Dr P for a consult. In the end his plan did not work, as I mentioned, but it did me reassurance that we had a plan. Sorry He did not help you,

Hang in there. I have put more faith into my GP than any other doctor. She seems to be more on top of the total "ME". It sounds like you might need someone to look at you as a total package, instead of the just the digestive track. In my csae we have been thinking that the meds themselves were causing alott of my issues, althought we have confirmed I am not in remisssion. My GP is the one who suggested this and made it happen with my GI. not sure what type of relationship you have with a GP (should be an internal medicine DR) but try and find a good one. Mine is who I talk to all the time.

Now lastly, my name is Brian as well....you have a great name!!! Hang in there.

Mirowpl
Posted 5/31/2012 12:11 PM (GMT 0)
Hey Brian,
Don't give up! I'm in the same situation as you. What's funny is that in my case the doc not only saw the inflammation but biopsies also revealed the active colitis and he is still dismissing the possibility of it being crohn's. I did a pillcam but sadly because it stayed in my stomach for 5 hours, they could not see my small bowel and so again diagnosis has been delayed if not completely dropped because he wants to see what's up with my stomach. Been waiting for an answer for 3 years and I share your frustration but keep on fighting for answers!!! I hope you get them soon! wink
Posted 5/31/2012 12:16 PM (GMT 0)
Hi Brian

It must be very frustrating not to get a definitive name for what you are going through. You mention "rectal inflammation". Some people who have UC have horrible symptoms from very little inflammation in the rectal area. Your Profile isn't showing so I can't tell what you've tried over the years and I'll just make suggestions (not knowing your history):

-Mesalamine enemas really help subdue inflammation and bleeding-they reach higher in the lower region than you might think-best taken at bedtime for retention
-Canasa suppositories also help but don't reach as far up-can use night + day
-Diet modification-it's been my (and others) road to remission-took me a while (years) to figure out my cranky gut because in the beginning everything caused D and bleeding but starting with removing gluten/wheat, dairy, caffeine will be a good start.

Over on the UC forum we have many threads on safe alternative treatments. Come visit.
Some ideas are: 2 week triple antibiotic treatment, diet mod. (of course-but there are several versions), fecal transplant therapy (FT), low dose naltrexone (LDN), Pascalite clay, probiotics (VSL#3 in therapeutic doses-not the drugstore stuff), and much more.

Best wishes.

Ima
Posted 5/31/2012 11:38 PM (GMT 0)
Mirowpl,

How funny that your name is Brian as well. I have a pretty good internist as my GP. He tends to be kind of "hands off" when it comes to my GI issues, but he does manage my TPN for me, which is a big responsibility. I think you're right about how important it is to have a doctor who looks at the total package. Someone recommended their GP to me because he is exactly the way you described yours, and he takes the time to really listen and answer questions. If I wasn't so dependent on my GP for my TPN and medications, I'd probably make a change. But I still may see the other one for a consult. Hearing how helpful yours has been, I think it might be a good idea. Thanks for the tip, and your support.

Brian
Posted 5/31/2012 11:45 PM (GMT 0)
sodisheartened,

I'm so sorry to hear that you're in the same situation as I am. The one thing that I've realized is that I'm definitely not alone in my frustration with the diagnostic process. I can't believe that your doctor found active colitis and still dismisses Crohn's. It is definitely strange that the pill cam stayed in your stomach for 5 hours, but then again, that doesn't help to explain why you have active colitis in your intestine. While it is definitely worthwhile to find out why the pill cam didn't move like it should have, maybe it's time for a second opinion, at least concerning the colitis. I hope that you're able to get a diagnosis very soon so that you can get some long-overdue treatment. Good luck!

Brian
Posted 5/31/2012 11:59 PM (GMT 0)
Ima,

My inflammation was labeled as mild, but like you said, it causes a lot of pain; especially during the colonoscopy. That's what prevented the doctor from reaching my terminal ileum. I actually never knew about the rectal inflammation until a couple weeks ago, so I haven't tried anything as of yet. I did try probiotics multiple times in the past, which did help a little bit before I wasn't able to handle them anymore. I think it was the Herxheimer reaction that ramped up my symptoms.

I'd love to try the suppositories and enema, but I don't think anyone would prescribe it for me. Without a diagnosis, I'm stuck in limbo without any treatment. I'm convinced it's either UC or Crohn's, but convincing my GI is another thing altogether. It's so frustrating.

Diet modification isn't really an option for me, because I don't really eat. I'm on TPN, so I get the majority of my nutrition through the IV every day. However, back when I did eat, I found that eliminating gluten and dairy was somewhat helpful.

I didn't even know about all of the other treatments that you mentioned. You've given me a lot of ideas that I can hopefully speak with my new GI about. I have an appointment in about 3 weeks. Thanks so much for all of the helpful tips! I'll definitely make my way over to the UC forum. Take care.

Brian
Posted 6/2/2012 1:12 PM (GMT 0)
Brian

Your doctor will be of no use for some of my suggestions except VSL#3 and possibly triple antibiotic therapy (only if you bring in the medical studies to show it has been used by the medical profession). The other suggestions are not supported by doctors unless they are holistic doctors.

Because Rx meds never helped my UC I had to look for other safe treatments to get remission. Some of us IBD'ers just do not respond to what is available in prescription meds and I've been trying for 12 years.

What I don't get is if you are so bad as to need TPN why any sensible doctor would not prescribe rectal meds for you to see if they might help. They have almost no side effects, only rarely is someone mesalamine allergic or possibly sensitive to the sulfur suspension liquid (and there is an "sulfa free" version available if so). Ask to try them for 2 weeks, what's the worst that could happen? Not much and they could possible help a lot.

If I were in your shoes I would also push strongly for the triple antibiotic therapy that has clinical trials.

VSL#3 probiotics also has clinical trials showing it works. Over the counter probiotics are 10 to 100 times weaker than VSL#3. But if your doc prescribes VSL#3 make sure it is the DS (Double Strength) type, the only one covered by insurance. VSL#3 is also available non-prescription (which is what I use because my insurance is high deductible) and I order it directly from the company and it's delivered in an ice pack.

Sometimes you just need to find the right doctor who will work with you to try different types of treatments. Not all doctors are the same.

Best wishes
Posted 6/3/2012 12:16 AM (GMT 0)
Ima,

I agree with you 100%. It's obviously pretty bad if I'm on TPN, so it's counterintuitive to try nothing. Unfortunately, doctors aren't always sensible. Or in my case, I think some of them think it is nonsensical for me to even be on TPN. My GP manages the TPN, but because he tends to be "hands off" when it comes to my GI issues, I doubt he would prescribe the triple antibiotic therapy. It would have to be my new GI, whom I have not yet seen. It's something that I will definitely ask him about when I see him in a couple weeks.

What's interesting is that antibiotics do help my symptoms for a short period of time. When I was hospitalized for sepsis a few months ago, I was put on IV Vancomycin to wipe out the infection. It did its job with the infection, but it also helped my GI tract tremendously. I hadn't felt that good in a long time. So the triple antibiotic therapy is definitely something that I think will help. I wasn't even aware of it until you mentioned it, so thanks for the idea.

I used to use Natren Healthy Trinity for probiotics. As I said before, they helped, but then my symptoms would intensify to the point where I couldn't handle it anymore. With the VSL#3 being so strong, do you think I would have trouble tolerating them? I may be able to get my GP to prescribe it.

What I don't understand is, if I don't have IBD (which is what my last GI said based on the biopsies), where is the rectal inflammation coming from? It doesn't magically appear for no reason, you know? They said it might have been the colonoscopy prep, but I know that's not it because I've had rectal pain and bleeding for a long time. It's frustrating when doctors have something like that staring them right in the face, and just choose to ignore it.

Anyway, sorry for the long post, but thank you so much for the information. I'll definitely be speaking with my new GI about it. Take care.

Brian
Posted 6/4/2012 4:04 AM (GMT 0)
I went through the same thing before finally an MRI found the diseased part of my intestine PRESTO. It took them about 5 years to finally diagnose it.


Keep pressing for any and all tests (I hope you have insurance as I know in the US nothing is free medically)

I guess being in Canada is easier that way.

Keep me posted please, take care
Posted 6/4/2012 7:11 AM (GMT 0)
chronsmom,

That's interesting, because I have never had an MRI on my intestines, and I've been wondering if it would be worthwhile for me to have done. After what you said in your post, I'm definitely going to ask my GI to order it for me. Luckily, I do have pretty good insurance, so it shouldn't be a problem. Thanks so much for bringing this to my attention!

Brian
Posted 6/4/2012 12:24 PM (GMT 0)
Brian,

I know it sounds weird doesn't it. But that was the last test given to me in 2004, I told the resident doctor at the hospital that I was not leaving until they found out what the heck was wrong. I was starting to think I was imagining it, and I believe some people were thinking I was a hypochondriac.

Good Luck and keep me posted.
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