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Mazen

Mazen

Joined
Nov 2, 2006
Messages
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Well, as some of you have noticed from my latest threads, I've been in some kind of flare for about a month now. With pain in my LRQ ranging from 3 to 10 :(

Finally I decided to see my GI. But when I called his office, they said he will be away for about a week. So I went to my GP, who recommended a new GI he knows. so I said why not.

This new GI ( a she by the way :) ) was a very nice person. We talked a lot about my history, and she told me some things which I also wa thinking about for a long time:

- first, 50 mg of Imuran were a very low dose and they were actually more or less doing nothing (but poisoning my body as she said), and my decision to stop them on my own 3 months ago was a right one.

- All the CT scans my old doctor gave me may have been harmful, and she recommends much safer MRI instead

- Also nobody ever mentioned strictures to me , although I had an obstruction before and always had trouble with fiber

- In her opinion, Crohn's is caused by an unknown bacteria. She said the doctor who will discover this bacteria will win a Nobel prize :)

So after a physical of my swollen LRQ, she suspects an abscess and she ordered 2 week course of Cipro and Flagyl (which for some reason have always worked in quiting my mild flares before) and an MRI which I have scheduled for tomorrow.

She also told me to take fish oil (which I was already taking), and a probiotic called Probiolog. She also told me about a herbal formula which one of her Crohn's patients swore about (I didn't get all the info; i'll check in my next appointment)

So, all in all, I liked this new GI, and I hope the MRI doesn't show anything serious. Wish me luck :)
 
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Hi Mazen,
Happy to hear you're on a new (and hopefully healthy) path with your new GI. She sounds knowledgeable. Let me know what herbal supps she recommends.

I'm on 50mg of 6mp. I'm ok so far but hate hearing it's "toxic"...yikes!
 
Thanks guys. Yesterday I did my MRI (my first by the way). It was like you are in a sci fi movie with this tube and all the buzzing and clicking :) Anyway, I will not get the result till Wednesday. But for the time being I'm doing much better on the antibiotics (but this is usual for me, the problem is when I stop them); I'm still thinking if I should start SCD afterwards (the problem is I lose lots of weight on this diet and I'm already thin), or maybe only a sugar free/Gluten free diet. Let's see: I'll discuss this with my new doc after we see the results.

As for the Probiolog, I don't know yet if it's doing anything especially that I'm on antibiotics, but for now I seem to tolerate it well. I'll keep you updated. Take care....
 
OK guys. so today I was at my new GI with the MRI results. It seems my terminal ileum is inflamed again, but also with lots of infection, as well as a fistula!!!

The antibiotics I've been taking for the last weeks seemed to have helped with the infection as the lump in my LRQ has almost disappered as well as the pain.

So we discussed this for a while, and the doc was very concerned about the fistula since if the disease remains active the fistula may cause a perforation or something. But for now, we decided to postpone any talk of Remicade and do the following for the time being:

- Stop Pentasa, and start another 5-ASA called Salofalk instead
- Keep taking Cipro for another week to clear the infection
- Take probiotics, fish oil, Calcium as well as my multivit
- Stop Gluten and decrease sugar as much as possible (I would go SCD but i need weight as I'm weak and tired all the time!!)
- Drink a herbal supplement that 2 of her Crohn's patients have been taking and it seemed to help them (I don't know it's name in English unfortunately)
- Have a blood test to chekc for Iron, B12, and Folic acid and see if I'm tired due to any deficiencies in these.
- Have next another CRP and CBC test to see if inflammation has decreased, else I may need to take a short course of Prednisone ( I really hate this :(
- She also talked about Flu vaccine, but was concerned that I may flare if I take it. So she will research it more and get back to me

Now if things get better, I'll get another MRI in a few months and see the progress of things ..... Let's see.... Hope things get better as I'm going in 10 days to a vacation in Tunisia and I want to be well to enjoy it :)
 
Hi Mazen,

Glad to hear that you are finally getting some answers. Sorry to hear that you are dealing with a fistula...they can be pesky little buggers. I also deal with chronic fistula problems (although mine is external). My doctor has referred to mine as what is called a complex fistula because it opens to two abscesses as well as the external passage. Like you, I respond very well to cipro and flagyl, or at least flagyl. Seems to be the only thing that keeps my abscesses free of infection. Whenever I quit taking flagyl, I am infected within a month. I have tried Cipro without the flagyl and it did nothing for me. I hope that the cipro will give you some relief, but I just wanted to share my experience in case this info may help you if the cipro alone doesn't do the trick.

Best of luck and enjoy your vacation!
 
Thanks guys.

Shantel: Well I'm lucky I never had the D, but C mostly. When I travel I usually worry about food poisoning or catching something especially with this Swine Flu scare. so I'll have to be extra vigilant :)

Shadycat: Unfortunatley it seems that I don't tolerate Flagyl well. It gives me tingling in my hands, and the doctors are afraid that this side effect can cause nerve damage in the future. so if I have to take it , i only take like 250 mg 2 times a day along with Cipro. I seem to handle Cipro much better....
 
Hii Mazen, I hope things are going well with your new doc and the infections are clearing.

Weren't you trying for a baby a couple of months back?? really hope that is going well :)

Do you think stopping the Imuran made the flare happen? I am curious as Imuran is my next suggested treatment.

Shaz
 
Mazen said:
Thanks guys.

Shantel: Well I'm lucky I never had the D, but C mostly. When I travel I usually worry about food poisoning or catching something especially with this Swine Flu scare. so I'll have to be extra vigilant :)

Shadycat: Unfortunatley it seems that I don't tolerate Flagyl well. It gives me tingling in my hands, and the doctors are afraid that this side effect can cause nerve damage in the future. so if I have to take it , i only take like 250 mg 2 times a day along with Cipro. I seem to handle Cipro much better....
Click to expand...

Glad you found a good new doc. it can make all the difference emotionally- I took Flagyl and I ended up in the ER with severe pancreatitis - the lucky 1% that can't take it -
 
hi Mazen
hope the new treatment ll work better for u, its great to have a concerned doctor
i stopped flagyl after few days,it was the worst thing ever happened to me. it seems that every possible side effect hit me.couldnt tolerate it at all
can u pass the name of that herb in arabic?
 
Hi Mazen!!!

I hope what they've ordered for you now will begin to work quickly & you start to feel better soon! :)
 
Thanks guys. unfortunately I didn't feel better till I got Flagyl back. i'm now taking a low dose 2*250 mg and i seem to tolerate it for now. I'm supposed to take it for a week and then get back to the doc. I'm also now more or less on a liquid/sofy food diet.

MD24: the name in arabic is 3leik.... I'm drinking it now morning and evening , but I guess it needs some time to take effect
 
3liek is the wild blackberry i think? we call it "dees" here but didnt know u can use the leaves. i googled it and it seems that it s very good for settling the stomach and intestine.
thanks mazen
 
Hi guys. Well it seems the 2*250 mg Flagyl daily is doing the trick and I'm feeling much much better. I'll see the doc this week to see how we should progress now.

Yeah, it is wild blackberry leaves. I found them dried at a traditional herbal store :)
 
Well, I guess I jinxed myself. Yesterday I ate some cheese in the evening and went out, and i guess it was a bit cold. I woke up at 02:00 A.M. with severe pain 8/10, took a spasmodic and Tylenol extra, vomitted half an hour later,and stayed awake till morning. My LRQ is so sore now with pain like 6/10 and I feel I'm back to square one :( I'll go back to liquid diet and up my Flagyl and hope this flare clears quickly....
 
Hiu guys. sorry for the long abscense, but things turned very bad last week, and I was admitted to the hospital and stayed there for a week. I was put on IV antibiotics, PPN, and then IV prednisone. Now I'm back home taking 50mg Prednisone and eating nothing but elemental drinks. I'm feeling bettre, no pain, but the lump in my LRQ is not shrinking. the docs think I may need surgery as it seems my terminal ileum and ileocecal valve are not functioning. I'm scheduled to have an MRI and colonoscopy in the coming weeks, and then we'll see.....
 
ooooh, sorry to hear you have had a bad time but good that you are on the mend!

A bit confused by the pain on the left with a problem located on the right though - my pain seems to have shifted left as well - Yikes!!

Get better soon :0)
 
Sorry to hear that Mazen. Good luck with the tests and keep us posted. We are pulling for you. If it's surgery, maybe that'll ease your symptoms.
 
Thanks guys. By LRQ, I mean lower right quadrant pain. so it's still on the right :)

Yesterday I saw my GI and she said I'm looking much better so I'm now allowed to eat some liquid, soft foods :) along with the elemental drink. I will stick to SCD stuff like chicken soup and boiled eggs. Let's see....
 
I'm so sorry about everything Mazen, but I'm glad you got a good GI!! I have spent a week in the hospital as well so I know what that's like. Be sure and get lots of rest. You'll be tired for a while so give yourself time get to your strength back. Laying in the hospital for a week takes more out of you than you realize.
My former GI was good like yours but her office stopped being responsive so I ended up with the new one who I can't stand.

Um, QUESTION: Does an MRI show evidence of Crohn's? I wonder why I've never been sent for one for my digestive problems? Hmmm... Should I ask for one?
 
Hi Miss E. I think the MRI helps if the place where you have your crohn's cannot be reached by a scope, which is my case. They never could reach my terminal ileum via colonoscopy. so and an MRI or CT scan was done, which showe bowel thickening, abscesses or fistulas.

I'm trying to rest as much as I can , but I had to go back to work. am trying to keep it as stress free as possible :)
 
Surgery

Hi Mazen, my names John and i have a very simmuler story to yours. I have just had surgery to remove the fistulla in the same spot you describe. When doing the opperation they found a second fistulla that went to the end of the large bowel that they also removed. its 19 days after surgery now and im feeling ok. Feeling better as days go by. I have suffered with the big D, although i think it is on the improve.

Ill stay in touch and let you know how i go. I see that the doctors are thinking that surgery may be an option for you.

Best of luck John :) :)
 
Hi John. Thanks for the support. I'm very afraid of surgery, but let us see what happens. For your surgery what did they remove? Was it the ileocecal valve? They told me if I had to do surgery they will remove a small pert of my terminal ileum+ileocecal valve+a little part of the Cecum. They also said I may have the D for life, as that part handles bile (but there is a med that starts with Q which helps with this), also I may need monthly B12 injections!!

Also, did they put you on any maintenance meds to keep Crohn's from coming back? The surgeon said that now they give like 2 or 3 infusions of Remicade after surgery to lessen the chances it will come back soon??

Here is my status for now: Currently on my second week of Prednisone with 40 mg. I have more appetite and more energy, but still have a big hard lump in my lower right abdomin which hurts when I press on it. It is like bruised from inside. It also hurts there when I go to the bathroom, which is not often these days as I'm having constipation (I guess due to the meds and low residue SCD diet). I'm afraid this is the scar tissue and fistula and that it may not go with meds :(

I'm trying my best to keep stress low, eat right (I'm on SCD with a limited diet of: chicken/carrot soup, eggs, homemade yoghurt, honey, tea and ripe bananas/pear). I also take a multivit, fish oil, probiotics and Cal/Vit D.

I have an MRI set in the next week or so. Hope it shows improvement....
 
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hi mazen,
glad for finding someone from leb, for sharing some stuff..though i'm new, i found it a bit of release to me in which i can express how i feel with people that understand the feeling..:D.. i'm writing this with same time as my stomach hurts donno why.. i just had a homemade cake.. i can't predict if it's from it or not...i'm also having a trouble in gaining weight like your case.. i'm 63 kg and 1.9m where i was before 73 kg due to corticosteroids but then lost all the gained weight due to several stomach problems followed by a new inflammation in my intestine...i've never heard of the herb the doctor prescribed to you even in arabic.. my doctor didn't specifed anything of that.. i guess he also don't know it..but if let's you feel good please let me know.
regards.
 
Hi Elie. So you have Crohn's? How is it doing these days? How are you feeling. Please don't hesitate about asking me anything you need. I have this disease for 9 years now, with all the ups and downs.


Well to update on me, last night was not very good. My abdomin was distented and I was feeling pain. I'm also having flu like symptoms. So I went to see the doctor, and after physical exam she thinks the inflammatory mass is growing again and it seems the fistula is acting up. so I'm now back on Flagyl, along with staying on 40 mg Prednisone, and waiting for the MRI on Monday to see what it shows. But she says it seems surgery will be most probably the way to go if the fistulas are still causing problems......
 
2ouf!! for 9 years.. well that's too much:( i was hoping to be cured from it..but as i follows my doctor, i knew that i will not get rid of it cause he cannot answer most of my questions..i didn't want to be infected and i didn't chose that.. well nobody chose that but i have a faith now that everyone has his own cross to carry... anyways that's too much of me talking...and i guess my question for how to get some weight on with this "gift" i feel is also an "answerproof". good luck mazen with all what your passing in... keep updating:D
 
Oh Mazen, sounds like things are still pretty rough for you!

I hope the meds start to do their job and get the inflammation under control so you can avoud surgery

Hang in there
Shaz
 
Mazen,
Keep us posted on your tests. I don't blame you for fearing surgery. Hope you find answers and that the meds start kicking in.
 
Thanks guys. Well , it seems I'm still getting worse. So I called my GI again, and she said to start again Cipro in addition to Flagyl to try to control things till the tests are done. Then we'll see what the best course is: Surgery or Remicade .........

I also called my old GI, and discussed what is happening with him. He said in his opinion Remicade is a better choice, but he wants to see the test results. so I'll send him everything next week.

Let's see what happens. Wish me luck :)
 
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I'm a boy :)

I'm going this afternoon to the MRI, so wish me luck.


i got my blood results today, I still a have elevated CRP and WBC but better than before, and low RBC, let's see............. Luckily the pain seems to have almost gone, after starting Cipro and Flagyl again. But the lump in my LRQ is still there, along with distention and discomfort when I go to the bathroom......
 
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:) Yeah, names can be confusing....... the lovely lady is my wife, who is supporting me in every way possible....

As for the MRI, unfortunately due to scheduling errors at the hospital, it was postponed till next well. Well, I'll see my GI before that and let's see what he has to say.........
 
Hi Mazen, i also had the discomfort about 1 - 2 inches to my right of my belly button. this ended up being a nasty fistulla about the size of a large fist. It was painfull to poke and always sore when i wore a belt. They havent told me what caused it but since the surgery ( just over 4 weeks ago) i havent had the pain and my stomach is soft to touch. I have lost some feeling in the scar area. my scar is about 18 inches long from hip to hip.

cheers John
 
Hi guys. today I saw my former GI. He said that I flared because i stopped the Imuran ( i was only taking 50 mg so I don't know if this is true!; the new GI I saw said 50 mg is avery low dose and does nothing!!!). His recommendation is that I should go back to Imuran, and consider taking Remicade very soon. He also said surgery is not needed, and Remicade should bring very good results.

Tomorrow I should have the MRI, and then I'll see what I'll do. Now I'm off the antibiotics, and tapering the prednisone. Let's see what happens. The good news is that I gained 5 Kg in weight as my appetite has come back due to the prednisone. Yay :)
 
Help Pleas!

Well, my 2nd MRI result is with me. the good news is the inflammation is more or less gone. The bad news is that the fistula seems to be getting worse. The abdominal mass in my LRQ has grown 4 times, and now I'm feeling there is a hard ball in my intestines pushing out and straining my abdominal muscles. I'm feeling fatigue, and find it more and more difficult to stand up straight and walk with this lump in abdomin.

My new GI is recoomending a colonoscopy, and if my crohn's is confined in my terminal ileum, the best option would be an ileo-cecal resecation surgery; she says Remicade will not help in my case.

My old GI on the other hand, is recommending I go back on Imuran 50 mg as before and start Remicade, saying that surgery is the last option.

So what should I do? Who is right? Has anybody had the same situation? Help please :ybatty:
 
Ah the old ask a question of 50 engineers and get 100 different answers problem!

Not been in your situation but here's my out-loud thinking:

Hmmm. Lets take each bit in turn starting with Aza. You were on it before but stopped for whatever reason. So we know you are able to tolerate it. My surgeon said that aza is a good drug for fistulas, at least in the perianal area. And all the info out there suggests it is a good remission maintenance drug. So looking at it from where I'm sitting, I'd recommend getting back on it - it doesn't seem unreasonable.

The mass in your abdomen. We know it has grown by a factor of 4. And it is causing you difficulties. How long can you go on with it there? aza is going to take time to do any good. And so is Remicade, isn't it? And will it make the lump disappear? Again the info suggests it's a good drug to use in the fight against fistulas. Do the Doc's know what the lump actually is, and why it's there? If not then someone is guessing and I'd go for the colonoscopy or somekind of scanning/x-ray to determine the what/why/options and then decide on treatment based on the evidence.

I understand the reluctance to go into surgery - I'd be scared as a scared thing that's very very scared indeed. But I'd also look at what would happen by delaying the surgical investigation, hoping that Remicade will sort things out.

I'd also consider why you have two opinions, why are you seeing two GI's?

Sorry that you are having to make difficult decisions, and hope that I've helped with some light rather than added to the difficulties.
 
sorry to hear you are faced with this decision Mazen! It is great in life to have choices but at a time like this it can be a bit stressful as to what is the 'right' one!

I hope you can sort things out to get well and start making that baby :)
 
Hi Mazen,
I'm sorry to hear about the news. I echo Beth's thoughts. What's the danger in postponing surgery to see if drug therapy works?

Surgery may be scary, but don't freak out. It may be an option that really helps your situation.
 
Mazen said:
Well, my 2nd MRI result is with me. the good news is the inflammation is more or less gone. The bad news is that the fistula seems to be getting worse. The abdominal mass in my LRQ has grown 4 times, and now I'm feeling there is a hard ball in my intestine

So what should I do? Who is right? Has anybody had the same situation? Help please :ybatty:
Click to expand...
Mazen, I have no idea who is right??? But the fact that the mass has grown 4 times larger is concerning. Is it filled with fluid/infection. Could it rupture? How are you feeling...I mean, are you at the end of your rope and ready to have surgery? Or are you willing to try other things???
 
Just got a call from my GI office, and he wants to see me immediately in the afternoon. guess he saw something urgent in the MRI. I guess today I will know if it's Remicade or surgey. wish me luck ...............
 
Hi guys. I guess it's final. I will join the Ramicade club. The doctor saidit is the best choice for me , and hopefully it will help close the fistula. If it doesn't work , then we will consider surgery.

He got me back on another 10 day course of Cipro and flagyl (and I'm already feeling much better on them) to clear the remaining puss and infection, as I cannot start the Remicade if there is still an infection. then I will do a chest Xray and TB test and some blood tests before it is OK to get my first infusion.

Can't say I'm not nervous about the the Remicade, but hopefully it will give me relief. Thanks all for your support through this last flare and hope for the best......
 
Hi Mazen...

Sorry you have gone through so much lately...
I'm glad they decided to try the Remicade first and hopefully it will do the trick!

Take care...
Sending positive thoughts your way.
 
Hi everyone. I'm sending this from the hospital. I have been here for a week now after I went to the ER with fever, chills, and a massive lump in my LRQ. A CT scan showed i have multiple abscesses. Well 2 days ago, the surgeon drained them and now i have a hole in my abdomin with a drain connected to it. Today I had another CT called CT Endocraphy. Based on the result they will decide if I have to get a resection of my diseased bowel, or if they will give
remicade a chance and hopefully close the fistula and stop the abscesses from coming back. This last week was hell, I hope I can find relief soon...........
 
Aw Mazen, so sorry you are in the hospital, it is no one favourite place to be. Just hope you can decide what avenue you want to go, and gives you relief. I wondered where you went! Take care of yourself.
 
Oh no...that's too bad Mazen!!
I hope they decide which way to go soon and
get you fixed up and back home again.

Thanks for letting us know.
We'll send positive thoughts your way.

Healing hugs~Nancy
 
really sorry to read what you're going through, Mazen :( i hope they can settle things down quickly for you! best of luck, & keep us posted. we'll be thinking of you!
 
Remicade or Surgery????

Well, I'm back to the big question: Remicade or Surgery?

The CT scan showed no scar tissue and the abscesses are gone. And today I'm feeling much better with very little pain.

So my GIis now saying that we should give Remicade a chance to close the fistula. The plan is to keep the drain , take antibiotics and start Remicade , in the hopes that it will close the fistula after a few infusions. if not, then back to surgery.

Or, I decide on surgery now and go for it.........

I don't know what to decide. Both decisions have side effects and no guarantees.... I know that everyone's Crohn's is different, but did anybody face such a situation and what did you do?
 
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Hey Mazen,
That's a tough decision. Never been in your shoes. If it were me, I'd opt for remicade and see how that went. You can always do the surgery down the road.
 
I think I agree with Fen, Mazen. I have tried Remi in the past, and, although it did not work for closing my fistula, I am glad I gave it a chance, otherwise, I would never have known. I think the general sentiment around here is that the side effects are not nearly as scary as they are made out to be. I think I actually had a worse time with Imuran. I did end up having surgery, but my situation is quite different from yours because my fistula was in my rectum and able to be repaired with a less invasive out patient surgery. If I were given your decision, I would probably opt to try the Remi, but of course, that is a big decision that only you and your family can make.

Best of luck!
 
I'd probably go for the meds before the operation. Just because once it's been cut out you can't get it back!
 
Thanks guys for your replies.

I have been out of the hospital for 4 days now, feeling much better. I have a drain in my abdomin for the abscesses (it's a scary view looking at a tube sticking out of your abdomin), but it seems to drain less every day so hopefully this means things are better. i'm also on antibiotics till I see my GI tomorrow.

As for my treatment, both the GI and surgeon, recommended I try Remicade before going for surgery, so I guess that is the way I'll go, if tomorrow after my GI appointment he decides this.
 
aw sorry you've had to have a drain. i hope it does do the trick, alongside the antibiotics. let us know what the GI says. good luck!
 
Yesterday I saw the GI and surgeon. They both said I'm doing very fine and there is no more puss or infection. so the surgeon removed the drain :) Now I'm supposed to start Remicade in a week's time. Wish me luck...
 
Man Mazen - just read everything - wow, you have been through it!! I am so glad you seem to be recovering well from the abscesses and that they think Remi is the best choice. I *really* hope it works well for you and can keep you out of surgery - let's keep our fingers crossed!! Let us know how the infusions go - wishing you lots of luck!
 

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