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Posted 5/13/2008 4:05 PM (GMT 0)
Hello to the HW gang!

Well my problem right now is that my Crohns is getting worse and worse and it appears that it's due to scar tissue that's built up since my 1st resection 9 yrs ago. So basically i have tried everything, from my diet to medication - none of which make an ounce of difference to my symptoms. I'm starting to despair as i fear i may be facing another surgery. I'm seeing my GI nxt week and he will decide during a colonoscopy whether or not he can do a balloon dilatation. If not then i do believe i'm all out of options. And my question is whether or not anyone has found a way to deal with narrowing from scar tissue or is it a matter of surgery or put up with it. My main symptoms are D & C - it varies. Non stop severe bloating, gas, distended feeling, and being exhausted most of the time. Basically i would really like to avoid surgery if possible.
Posted 5/13/2008 5:32 PM (GMT 0)
Well before my second resection my chief complaint was really bad nausea. I kept getting partial obstructions and felt like I was forever puking. But I will tell you that if medication and diet aren't helping, then more than likely your problem is scar tissue. Hopefully the doc will be able to stretch the area wider and help you avoid another surgery. Good luck and keep us posted.
Posted 5/13/2008 6:07 PM (GMT 0)
I wish you luck with the scope, maybe the doc can stretch the area and avoid surgery for a little while longer at least. Karen
Posted 5/13/2008 10:22 PM (GMT 0)
I guess in my view if you are going to end up with surgery again anyway and you are in pain and suffering now, why not go ahead with the surgery? Having never had surgery I can't say how bad it is. But I do know if you are going to wind up there anyway and it may help you feel well for awhile, than go for it!
Posted 5/13/2008 11:13 PM (GMT 0)
I agree Fitzy and I've had one resection.
Posted 5/13/2008 11:26 PM (GMT 0)

I agree to with the surgery; being married to a man who has had 3 surgeries and has done really well between them. He has never had to take any of the new meds yet and his last surgery was 15 years ago.

I know each person's disease takes a different course and in the end you have to discuss you choices with your physician and make you choice but know we are here and wishing your the best.

Hugs
Kitt

Posted 5/17/2008 8:43 PM (GMT 0)

Lila, hang in there kiddo....sounds like we are in the same boat.  Although I have never had a resection (and really hesitant on starting Remicade Infusion due to side effects), my Crohns is not responding to Pentassa and Entocort and my GI says it is my next step short of surgery.

Does anyone in the group (which is absolutely marvelous and informative) have any advice (one way or the other) as to Remicade or surgery? It appears from all the CAT scans, x-rays, upper GI's that my main issue is scar tissue and surrounding inflammation in about a 20 CM area of small intestine just above the illeum?

Best wishes, and , looking for any advise,

Rog

Posted 5/18/2008 1:27 PM (GMT 0)
Crohn's tends to "skip" areas. Do you have other areas of active disease than this one area they are suggesting surgery for? Crohn's also tends to skip UPWARDS in the digestive tract, rather than down.

What is the quality of your life now and what has it been the last year? Quality of life is MY criteria for when or if I agree to resection.

When my quality of life sucks, especially if there is only the one area of active disease, I'm all for surgery. You have to decide on your own criteria of when to agree to surgery.
Posted 5/18/2008 3:01 PM (GMT 0)
Saw a colorectal surgeon just over a week ago. I have a narrowing in the sigmoid colon which two GI's have thought that I would require surgery. Saw a general surgeon in December and she didn't think I required surgery then. Although colorectal surgeon said surgery was an option, it was not my only option. He said he could do balloon dilation by not as long as there was inflammation present. At the time there is inflammation at the stricture but completely normal before and after. Am waiting to go back to GI and maybe go on some medication to reduce inflammation. All have said my case is unusual in that I have no symptoms. I am not against surgery, in fact sometimes I think if that's all that is going on just cut it out but know that there are risks no matter what you do and I do not want to cause problems that I don't have now.
Posted 5/18/2008 3:19 PM (GMT 0)
I am all for 'quality of life' and if that were the case I would not do anything for my situation including going on medication. Know somebody who had a resection 20 years ago and has not been on any medication or had any problems since. Can eat anything since her surgery.The colorectal surgeon didn't think doing nothing was a good option. Hard to make decisions and wonder if you will pay for it down the road?
Posted 5/19/2008 3:04 AM (GMT 0)
the problem with surgery is it causes scar tissue, which can cause problems. I have adhesions, which stuck my colon to the inner wall of me. it was cut away thru surgery, but I am sure this is a problem that will be with me forever. I go with the quality of life focus...do whatever you can to feel better and see what happens.
Posted 5/19/2008 6:49 AM (GMT 0)
Hi guys, thanks a mil for all the replies. I know my problem is not a major one in the big scheme of things and compared to others on this forum.
Well i actually did quite well after my first surgery 9 yrs ago. My GI did not have me on any meds except Questran which i prob have to take for the rest of my life. I don't know whether the idea of no meds was good one. I believe that i should have been on some sort of med as a preventative means.
As for quality of life - my quality of life is quite good, as in i am managing to hold down a full time job and i try not to let the tiredness stop me from doing things i enjoy. My main problems are that eating is no longer a pleasure, every mouthful i eat causes discomfort, bloating (looking 5/6 mths pregnant), distention and tiredness. My BMs are not a major issue although they vary from day to day between D & C and quite often i get what feels like a really bad tummy bug maybe once a month or so. This can last from 2 - 5 days at a time.
According to my GI there is no active inflammation, and he's almost positive my problems are all due to scar tissue. But i reckon the scar tissue is quite bad as i can even feel the bubbles of gas trying to get through my intestines and the fact that no matter what i eat i have constant and severe bloating which i have to say is the worst part. It's the discomfort i feel everyday that's really getting me down. Even though i'm quite slim naturally, after i eat - I feel like a whale sitting at my desk and sometimes just want to stick a pin in my tummy and see what happens!!!
Ingrid Norway - i have heard alot about LDN but i'm not sure what to think. It sounds great but would it be of any benefit if the main problem is scar tissue and not inflammation?
Regorlaup - sounds like we are in the same boat and our crohn's is in the same area also. I am also very interested in hearing abour Remicade and people's opinion on this treatment as my GP has suggested it a few times but again - not sure if it would be a success for scar tissue alone.
As i said, my quality of life is not all that bad but the symtoms i have are really starting to become quite a negative impact on my life and it seems that the symptoms are getting worse every day. I am seeing my GI tomorrow - i'n having another colonoscopy where he will see if a balloon dilatation is possible. I pray he can do this and that it will be of some benefit. If not i need to seriously consider the whole surgery option, even if i am against it.
Thanks again for all your posts. :-)
Posted 5/19/2008 3:35 PM (GMT 0)
Hi I did Rem. for 6 months and had to go off it and had a resection. Sort of feel like I put off getting surgery just to end up with one but I was ready for it . Finally felt that it was time and of course the GI at the Hos. that I got it done in said there comes a time when it is necessary. I am wishing you all the best with you scope and let us know how things are going. lol gail
Posted 5/25/2008 5:52 PM (GMT 0)
Hi there,

Just reporting back from my colonoscopy. Luckily the GI performing the colonoscopy was able to perform a balloon dilatation. That was last Tuesday, and i did not get to speak with my GI and will have to wait until August for this. After the procedure (whilst i was still half asleep) the GI told me that he didn't widen the area too much just to be on the safe side. Unfortunately, i have not felt any better since the procedure. My symptoms have just become even more varied ie. i usually have 3-4 incomplete & loose BMs usually between 8am and noon. Then nothing all day and a distended, bloated feeling along with feeling like i need to go but there is just nothing happening. It's so frustrating, i just do not know what's going on. The extremely loud gurgling noises are still there also and the constant bloating is as bad as it has always been.

I am just wondering is it worth trying something like Humira/Pred/Remicade.

Is there any chance that these meds may help if my problem is mainly scar tissue. I've only been tried on Entocort and Imuran together, and felt no difference. If anybody has any further suggestions i would be delighted to hear them..........I understand everybodys opinion on the benefits of surgery but i personally feel that i will end up with the same problem again - scar tissue and maybe even adhesions. So i don't see the point for that reason.

Many Thanks,

Lila

Posted 5/25/2008 6:05 PM (GMT 0)
Well... Isn't Entocort a corticosteroid like Prednisone? I mean... Out of the three you mentioned, (Humira, Remicade, Prednisone).... Prednisone doesn't have those really, really, really scary side-effects.... But I can't say anything about them... never taken them....

Prednisone sucks, though.... and I think it's mostly good for just keeping inflammation down... :(.... I'm on 40 mg of prednisone right now... and... it's not doing me too much good... and I'm suffering from a lot of its side effects... and I know I've been on it for way too long... :(... And I want off of it really bad...

So... I don't think I'd recommend it.... especially since you're already taking a corticosteroid and it doesn't seem to be helping...
Posted 5/25/2008 7:57 PM (GMT 0)
Hi Lila, I have been reading all the posts here.  I am really wondering why your doctor has not prescribed Remicade or Humira so far.  You seem to me to be in a lot of discomfort and need something else.  I hope the balloon proceedure helps, but I also think that trying a different medication courd help further.  I have been on and off Prednisone for years and years with varying help, but always with strong annoying side effects.  I had a mildly good response to Remicade and then developed a reaction to it.  I have had great success with Humira and have had no side effects at all. I know everyone is different, but I sure would try medication before any surgery if at all possible. 

Posted 5/25/2008 10:10 PM (GMT 0)
I see you had a c-scope, what about a small bowel follow through, CT enterograph, etc. to see if you have active inflammation somewhere in the small intestine? This would be more relevant if your bloodwork shows signs of inflammation or you are running a low-grade fever. If your problems are due to scar tissue, drugs will not change anything.

Have you ever considered that you might have IBS in addition to Crohn's?

What have you tried as far as far as dietary changes?

Posted 5/26/2008 2:42 AM (GMT 0)
I cannot see how any drugs will help with scar tissue, especially if there is no inflammation or active crohn's.

Surgery may be the only option. Maybe they can do it laparoscopically? The healing time is alot faster, apparently.

I may be facing surgery too (my second one). I'm getting partial obstructions almost daily, except a little less obs. on high doses of prednisone.

I'm also pregnant and very worried. :-(
Posted 5/26/2008 1:23 PM (GMT 0)
Celey - I'm not sure whether those Pred is the same as Entocort. Nonetheless, Entocort has done nothing for me so far. Maybe Humira would be worth a try.

Potatoqwn - I also cannot understand why i have never been tried on these meds before, that is why i cahnged GIs and my new GI wants to start from the bottom and work his way up. The problem being is that here in Ireland when you've had a colonoscopy or sbft, you have to wait at least another 2/3 months to get an appt with the GI to discuss the results. Therefore i am still not 100% sure as to whether or not my crohns is active and whether i have inflammation as well as scar tissue. I have to wait until August for my nxt appt. The balloon dilatation has made little or no difference, so i suspect that he could only stretch the area very slightly and it wasn't enough to make a difference.

Illini - Yes i've now had all the tests but my GI wanted to see all the tests together before he could decide where to go next. So i have to wait until August to finally get some proper info from him as to how much inflammation i have and how bad the scar tissue is. I have considered that i may also have IBS but none of the IBS medication that i've tried has ever made any difference.

Roni - Congrats on your pregnancy, i can understand the worry you must be going through. Hopefully something can be done about the obstructions. I have read on previous posts that surgery can be done whilst pregnant but hopefully you won't have to go through that. Anyway, i understand what you're saying about surgery, but i really would like to avoid it because for the most part my crohns is not too bad and i would be weary about the crohns coming back worse after surgery or any further complications that surgery may cause. I guess i really don't know what to do and i'm tired of waiting waiting waiting for the same tests again & again and then waiting to see the GI. I'm going on holidays in June and really would like to feel well and enjoy it. But i don't even know if my GP can give me something whilst i'm waiting for the GI appt. I've been working so hard and have taken no sick days in over a year so i really want to enjoy the break and not feel miserable throughout the whole thing. Anyhow i don't mean to sound like i'm moaning, i would just love some relief!
Posted 5/26/2008 4:08 PM (GMT 0)
Don't feel like you're moaning, LiLa.... Your frustration is VERY understandable... And your desire for relief, too, is VERY understandable.... *Hugs* This disease sucks... pure and simple....

Anyway... was looking at the CCFA website... and... looks like I remembered right... Entocort is a corticosteroid like prednisone...

And I believe someone on this board mentioned that Entocort specifically targets the intestines.... Not so with prednisone... prednisone targets... err... pretty much the entire body... (probably means worse side effects)...

But yeah... Your medicines are clearly not working for you... so... You definitely need to try something different... I hope you can find something that will work for you and help get you feeling better...

*Hope the same for me and everyone else that is suffering right now, too*
Posted 5/28/2008 12:27 PM (GMT 0)
Hi Celey,

Thanks for the info. Much appreciated. And *Hugs* back at ya! I see you have alot of recent posts and are dealing with alot of problems right now. I really hope things will improve for you soon. I guess all we can do is try to stay positive and hope for the best, for everybody...
Posted 5/28/2008 3:20 PM (GMT 0)
Entocort is also more quickly metabolized by the body, so less of the intense steroid side effects. However, it is for small intestine stuff. I haven't ever taken it given I am all in the large intestine. But, my doc did have some compouned into a suppository for me so that I can use it as a rectal med. (I won't use enemas after the rectal hemorrhage.)

Good luck LiLa on whatever path you choose. Scar tissue is so frustrating... I hope you get to feeling better soon!
Posted 5/28/2008 7:57 PM (GMT 0)

Thanks a mil sr5599,

Yes i must say it's so frustrating to know that scar tissue is causing all my problems and not the disease itself (although i know it's a result of the disease), but you know what i mean. My crohns is located in the terminal ileum so luckily i have had no rectal issues or fistulas etc. But i am aware things could change at any minute with this awful disease and it can spread elsewhere as and when it pleases.  

I'm kind of assuming that if Entocort is specifically targeting the small intestine and hasn't worked for me - then nothing else will work. I guess i'll just have to wait until August and see what my GI thinks of the situation. And in the meantime i better go shopping for some baggy tops to hide the bump (the bloat bump that is)!!!

Posted 5/28/2008 8:16 PM (GMT 0)
Hi Lila. Sorry to hear the bloating hasn't improved. Would you mind sharing some tips with me that you've managed to acquire to help? Anything at all? Particularly at night my bloating is bad and I find it hard to sleep. I usually feel best in the morning.

I'm having a barium xray in 2 weeks to take a look at my small intestine.

Take care.
Posted 5/28/2008 8:44 PM (GMT 0)

Hello Mike,

I was also diagnosed in 99' but unfortunately i needed surgery straight away as i'd had crohns for about 7 yrs before that and was suffering pretty bad. So you're quite lucky to have gotten this far without any surgeries!! Sorry to hear about the bloating and discomfort - i can sympathize completely.

Well let me see - the bloating is worse at night for me too. So i make sure i don't eat after 7 or 8 in the evening - unless i really have to and in those instances i just eat toast. (It's difficult to do if you're used to eating at night but you get used to it and feel much better for it) Then i try to drink as much fluids as i can before going to sleep and this usually guarantees a BM in the morning-after which the bloating usually dies down until lunch time.

Also i have found that cutting out gluten has helped. (The tests for coeliac have been negative but i know that it still makes a difference for me to cut it out) I haven't cut it out completely, but because i eat alot of bread - i try to stick to gluten free bread and pasta. I also believe that eating small amounts regularly makes a huge difference as my tummy cannot handle big meals at all. If i eat a big meal i might as well go to bed for the rest of the day because i can't move after it with the discomfort.

And another thing i try to do is stick to fairly bland food UNFORTUNATELY! Mostly chicken/Fish, i can eat salads without any problems, actually my diet is so boring i can't remember right now what else i eat tongue Occasionally i crave red meat so i allow myself a small amount. I eat as little sugary food as possible (which DEFINITELY helps), i stay away from processed foods and i don't drink soda at all. I cheat the odd time as i'm only human and i have an occasional takeaway or fried food or bread, but if i'm sensible for the most part it helps me alot.

Hope i haven't bored you with my tips, but if they are of any help to you then i'm happy! Best of luck......Lila

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