Questionable treatment

[Gary]

Hi All,
I'm new here. First time poster, Long time crohnie.
Appendectomy in 1988, ileocecal valve was removed at the same time. Pathologist noted patches of inflammation and questioned other possible cause. Did not know what crohns was at the time.
Belly aches returned in 6 months. Test confirmed crohns. Asa & prednisone prescribed. In 1993 a fistula from my bowel to the bladder. Small bowel resection at the terminal ileum.
In 1998 the exact same thing happened again Another resection.
I started taking Pentasa after the third surgery and although I have had periodic pain and diarrhea, I lived, worked, and ate fairly normally with no surgerys in the past 13 years. :thumright:

Here's where it gets weird. Last Spring I went to my MD for a Pentasa refill, but there was a different Dr. subbing for him. She ordered a colonoscopy. While in the bowel the attending Dr. did a balloon dilation of the ileum. I was really good for a few weeks, but since then have had the worst symptoms yet. Constant pain, obstruction and most recently Intestinal bleeding. Now I am seeing a surgeon and gastro-specialist and another surgery is likely. :yfrown:
I thought I was on cruise control until I got the colonoscopy instead of a prescription refill. It seems to me that balloon dilation of the the narrowing of the anastomosis stretched the bowel out alright, but when it collapses, there is even more tissue to obstruct. Anyone else have similar experiences with that?
Gary

 

[Astra]

Hiya Gary
and welcome

Aw, you've been thro the wringer with this disease!
Sorry can't help with that procedure, but big welcome anyway
lotsa luv
Joan xxx

 

[muppet]

Is balloon dilation primarily a UK/Canada thing? I have scarcely heard about them until I joined this forum and my doctor has never mentioned them.

But then I don't have strictures and neither does my daughter.

 

[scottmyster]

HI gary, welcome to the forum , i am sorry you been through a rough time lately . i don't know much about the testing. i have had several colonoscopy but neither with the balloon.
i am thinking i have strictures because i find i am more constipated now. more than ever. so i have to get another barium follow through and a colonoscopy and probably more other tests done. i have not yet have had any surgeries but, i think i will have one down the road. i hope your tests turn out fine. best wishes.

scott

 

[Gary]

Hi again,
Thanks for the kind words.
I do live in Canada. :canada_flag: Being self employed, I am thankful we have universal medical coverage.
Dont know if dilation of the small bowel is only unique to Canada and UK.

I rely on common sense. As an analogy, It seems to me if a person takes one of those skinny long hard to blow up party balloons, leaves it inflated for a while then lets the air out, You then will have a larger balloon in the deflated state than the original. Like a woopy cushion.
I'm no medical expert and I'm probably wrong that the bowel would behave the same way, But it is a coincidence my problem returned after this procedure.
Gary

 

[xJillx]

Oh, Gary, I am so sorry to hear this. You were doing so well! I don't have any experience with this type of procedure, but hopefully someone with more advice will come along.

I sure hope you start to feel better soon. Hang in there!

 

[Grant]

Hi Gary, sorry to hear this. I've had plenty of dilations & have got another coming up soon. I've been awake for them & really they dont open it up much. Its opened up enough to let larger particles through. The trick is getting something to stop the crohns there & then. Because if left the crohns will get to work on the stricture & the process will have been a waste of time. But if the treatment works then it can last a reasonable length of time(2 yrs) once in my case. Sounds like you had active crohns @ the amastomosis & thats the probably reason why it collapsed. Hope things improve for you.
Rgds
Grant

 

[Crohny]

Hi Gary,

My new doc wants to do a dialation in my obstructed area. Any word of advise?
How are you feeling now?

 

[Gary]

Hey Blake,
I suppose my title "Questionable treatment" Should have just read "Question treatment"
as this was new to me at the time. Did'nt mean to scare anybody.
I have a bit more information on this procedure since then. Grants reply above sums up that it works for him. I suppose everyone is different. Although I am feeling better latley, the dilation did not get rid of stictures, which is my underlying problem. I am almost certain that the flare up was more of a coincidence rather than caused by any treatment. I am sure that the Drs. are trying to help us all as best they can. This is just one more method. I am still interested if anyone else knows anything different on this.
Hope that helps. Good luck.
Gary

 

[vinay]

hey guys i am new on this site
i am on pentasa 500g taking 3 tablets a day
my doc last month told me to take pentasa saches 2 a day of 1gm
hey guys i am having skin infectiom from pentasa tablets and i took pensasa sache for 1 month but om effect on skin problem
doc says u will have to take this medicine only for life time
it has least side effect

so is there any difference in pentasa tablets and pentasa sache

i think tablets are easy to take as compare to saches
more over saches are costly then tablets

plz do reply guys

 

[Grant]

Vinay, I take the tablets but have never come across the sachets. I hope someone else can answer that for you.
Rgds
Grant

 

[scottmyster]

HI Vinay, If i were you i go back to the doctor and tell him about the side effects your having on the sachets. if the pill had no side effects to you then i would diffently stick with the tablets.But if the pill are causing side effects you might want to ask him about Asacol. it's another form of pentas without the side effects. i have been taking them for 21 years now and have had no side effects to the drug. Just a suggestion. best wishes.

scott

 

[Misty-Eyed]

Interesting you say this, Gary. In November 2010 I had a colonoscopy in which they had to balloon dilate the stricture in my rectum to get the scope past. (A colonoscopy 5 years before failed to get past that stricture. I don't know why they didn't dilate it then). So, I'd had this stricture at least 5 years previous to this dilation and then in Feb I was admitted as an emergency with an obstruction at the site of the stricture in question.

I didn't think much to it at the time as I wasn't really aware that the stricture in my rectum was so bad, but now I'm thinking it's a bit more than a co-incidence? They manage to open my stricture loads with another type of dilation in Feb and now I'm going in for another balloon dilation tomorrow. Really hoping it lasts me till my op in October as I'm going on holiday in Sep!

 

[Grant]

Misty-Eyed, the possible reason they didn't dilate it 5 yrs ago could have been down to who did the Colonoscopy.
Over here in UK I recently found out that the reason they didn't dilate mine in June was because it was a Snr Registrar who did the procedure & as such he wasn't qualified. Whereas a fully qualified Gastroenterologist or indeed another fully qualified Dr is.
Strange & TBH I rather feel that it was a waste of time now.
Rgds
Grant

 

[Misty-Eyed]

Thanks for the info, Grant. You're probably right. Apparently the last person that did mine was a really well respected endoscopologist (have no idea if that's the correct term!) who was the best of the best. She couldn't get past the stricture in my sigmoid so was told no one can! Hope fully the one tomorrow will last a couple of months. My whole colon is coming out in oct so it won't matter after that!

 

[Grant]

Good luck with that Misty-Eyed, you've been through a lot & I hope that goes a long way to ending your problems.
Rgds
Grant

 

[Gary]

Hmmm?
Interesting Michelle.
From what I've read, I know that sometimes sugery is the only option. eg. strictures, fistulas. But on the other hand it seems the more surgerys, tests and interferance we have, the worse symptoms can get. Sort of a catch 22.
Good luck with your surgery in Oct.
GARY

 

[Gary]

update

Hi All!
Just thought I'd update.
Had surgery last Oct. Close to an emergency surgery. It was a mess in there.
Lost 35 Lbs. Had 68cm of large and small bowel resected. Recovering well since then. They put me on Imuran but I got very stiff and sore in the joints and lower back. Had to quit. Currently only on Flagle. Eating good, put on 15Lbs. already and waiting for the next course of action from my specialist.
Gary

 

[xJillx]

Thanks for the update, Gary!

I am glad you are recovering well. I hope you have many, many healthy years coming!

 

[Gary]

Thanks Jill,
I hope your doing well. Today I got the word that they want to put me on a drug called "Methotrexate" also an Imune suppresor. Dont know much about it. Let me know if you do, otherwise I'll check out some forums with that key word.
Gary

 

[Gary]

SUCESS! for now.

Quick update.

Gastro doc wanted to put me on humira a few months after my last surgery.
Considering he put me on methotrexate, I thought, Whoa Doc. One thing at a time. Held off on humira and glad I did. Had a recent colonoscopy.
NO SIGN OF CROHNS!
Considering I've had 4 surguries I am so happy. Found out that 18.5% of crohnys also have celiac disease. Was never tested until a few mounths ago.
And on my request. Hmmm... come on Doc.
Not sure the test was preformed correct, but tried gluten free for a while anyway. Don't think it helped, but cut way back on wheat products anyway. Currently eating as healthy as possible including all vegtables, fruits, nuts, high fibre, fresh meats, fish. Cut out all junk food, processed foods and way back on sugar and fat. Lots of water. The only Med I'm on is methotrexate supplemented with folic acid, multi vitamin, D3, iron, fish oil and cats claw. Oh ya , and montly B-12 jabs and imodium. Still cant get rid of the shits. Oh well, still a lot better than its been in my long experiance with this awful disease. I know its cronic. I know I still have it. If it flares I can always try the biologicals later, but for now it's in check. Everyones different, but this is what seems to be working for me.

Oops! just relized this is not a quick update anymore.
Good luck and Gods healing touch to all of us.
Gary

 

[Mountaingem]

So glad you're doing better Gary-I hope the Humira works for you, should you decide to go that route. Remicade has really helped me-best wishes to your future health! You deserve something good after all you've been through.

 

[Gary]

Thanks Jeannette,
Forgot to mention that I eat a home grown yogurt from a small mom & pop operation locally and I'm not on flagyl anymore. Apparently flagyl kills all the bactiria in the bowell? My research found that some bactiria (probiotic) is good for us.
Gary

 

[Gary]

Update...
A year since the last surgery. I have been eating healthy since. The first 8 months after the surgery were symtom free, (except diarrhea) but sad to say flare ups have returned.
I am dissapointed.
I will now take the speacilist advice and start Humira this week.
Hope this helps.
Gary

 

[afidz]

HI Gary, I hope that Humira works for you, it did wonders for me! I went into remission after about 3 years of active flare ups 2 months after starting Humira. Hope all goes well! keep us updated

 

[Angrybird]

Sorry to hear the tum has acted up on you hun, will be keeping fingers crossed that the Humira can sort things for you, we do have a sub forum for this that is worth checking out: http://www.crohnsforum.com/forumdisplay.php?f=59.

 

[Grant]

Good luck Gary, sorry to hear that your flaring again. Hope the Humira gives you the relief you deserve.
Best Wishes
Grant

 

[Gary]

Thanks all,
For the words of encouragement and the Humira link.
I will stay positive and hope Humira works. Loading dose today.
I know we all have issues with this awful dieses, but it seems to me that
my thread titled "Question Treatment" has turned into my story.
Thanks for listening.

Good health to all of us!
Gary

 

[Gary]

IT'S BACK.
Colonoscopy today.
No sedation, so I was able to watch. As the Gastro Doc got to the anastomosis, I saw yellow patches spread evenly around the inside of the small bowel and as far back as we could see. I said "that does not look good." He agreed. I started injecting Humira weekly last summer. I guess it's not working. I will await the next course of action. I hate crohns.
Gary

 

[Grant]

Sorry to hear this Gary, I hope they can come up with something else for you. This Disease eh, you can be sailing along reasonably happy & then wallop. Its horrible & I feel for you.
Best Wishes
Grant

 

[Gary]

Ya, Isnt that the truth. You know it too.
Thanks Grant & Good luck to you too.
Gary

 

[Gary]

Blood work came back. I guess my body was not responing to Humira.
Perhaps antibodies.
Doc figures the other TNF blockers would be the same result.
Doc is trying to knock it down now with a course of prendisone then wants to try Something called stelara next. Don't know what that is.
Will look into it and post results later. I'll try anything to prevent another surgery. Hope it works.
Gary

 

[Gary]

Update...
1 year on Stelara
No improvement.
Knocked down condition with prednisone.
On to Entyveo.
I'll keep on trying what my doc suggest's.
Something has to work.
Right?
Gary