Hi all, I usually respond to posts on this site,rather than post, but now need help.
I saw my gastro yesterday for a 3 monthly follow-up. My last calprotectin assay test showed my levels were 4 times the norm at 80. This means I have inflammation in the alimentary canal. The biggest problem yesterday in the consultation was a stricture in my small intestine, diagnosed through a recent endoscopy. He has ordered an MRI - quite unheard of in my 37 yrs of Crohn's. I normally have colonoscopies and endoscopies but he said an MRI is without ironising radiation and is the best way to go now. Lost me there. He is now talking of surgery to resect that part that is narrowed. I was in shock and didn't even think about asking if it means an ileostomy and a bag.Calmed down a lot today after doing some thinking and resesrch.
I don't really know anyone on this site with Crohn's, usually just respond to people who are struggling for a diagnosis with gastro problems. We have serious problems in England with MRSA and C.diff in hospitals and my husband has said tonight that he will now allow me to have surgery here and is talking about going to France.
I am just not very concerned, but actually terrified. Not a bit like me.
Is there anyone out there in cyberspace that has had my experience? The thing that worries me most is the ileostomy bag, as that is where my stricture is.
I am on weekly injections of methotrexate , which I do at home.My blood levels on MCV and MCH are out of range, but my gastro is not concerned. We talked about the new drug Humira, but its side effects are even worse than methotrexate, with TB, lymphoma and even death. I don't want go go there, but know I have few options left
Your area isn't the only one with problems of MRSA and C.diff, it's also very prevalent in the U.S., too, unfortunately. It's nice to know that there are some areas, like France, that may be doing a better job of keeping those problems in check.
Lizzie, I don't have Crohns, but I have a bit of knowledge about GI issues and saw your post so I thought I'd put in my 2 cents worth if you don't mind.
If you're expereincing a stricture and your large intestine is in pretty good shape - if England is like the U.S. - you'll probably only end up with a resection which will probably include the loss of the terminal ileum. That will probably cause some problems with dumping from the small to the large intestine. If your ascending colon is in good shape, the attachment should be quick and fairly easy, and you won't have to worry about a bag.
Both Remicade and Humira have side-effects, as all meds do unfortuantely, but in the U.S. Humira is more typically used after Remicade has produced 'problems' - then Humira is tried. The most typical immediate side-effect is an allergic reaction to Remicade, which in some, can turn up pretty quickly. When that happens, a switch to Humira is the next step.
But Remicade - in most cases up until about a year ago - was 'saved' as the drug of last resort. Docs now seem to be using it earlier in the course of the disease state and there are many people who are able to use it successfully for several years. If problems pop up, then they may switch to Humira.
Yes, unfortuanately both biologicals can produce some horrendous side-effects. There's no way to down play that fact. But from listening to people who take the drugs and experience enormous relief, so far few would give it up and they seem to be willing to try to turn a blind eye to the possible problems, or they're watching their systems carefully in the hopes of trying to 'catch' a problem before it crops up.
I don't know what the current thoughts are in your neck of the woods about 'pallative' measures such as trying probiotics or following a gluten-free diet, but both are being tried by individuals here in the U.S., some with some success in improving the quality of life. Just a thought...........
Hi Lizziecee. I'm sorry to hear this latest news. You've always been so kind to respond to my posts, so I thought I'd respond to yours. I don't know if you remember my story or not. I had a mass found in my Terminal Ileum (where the small inestine hooks up to the large intestine). We found this out through a Cat Scan. Since I was having some symptoms (stomach pains, nausea, etc.) the last few months they did a Upper GI with Lower Bowel Follow Through. They saw that there was some restriction, narrowing in that area, and felt it best to go in through surgery and remove it, resect the intestine and biopsy the mass. Everything went very well. The biopsy showed fibrous scar tissue with ulceration showing classic Crohns Disease. That's how I found out I apparently have Crohns.
I know it's scary to think of surgery. All I can do is tell you my story. Everything went really well with me. It took me about 6 weeks after the surgery to fully recover. I'm doing great now! :)
I seriously doubt you would need a ileostomy bag. From my understanding, they would have to remove an awful lot of colon for that to happen. My grandmother had cancer two times, and two times they had to cut out several feet of colon. They did tell her that if she got it again, she'd probably have to have the bag. Fortunately, she didn't get the cancer again. You should go ahead and talk to your doctor, though, and get some relief from your fears and concerns.
The one thing you may notice after surgery is you may have more loose bowels or even diarehea. I found that I was having that. I actually talked to the Gastro doctor today and he said that can happen after a resection and that as long as I wasn't having it like 5 or 6 times a day, I was ok.
Please try to not worry. Now days they are so advanced! They will probably do a laproscopy type surgery on you and probably won't even have to make a really big incision. I had a partial laproscopy with an incision that was long enough for him to slide his hand through. I'm healing nicely though. It's been two months now for me and I feel great!
Let us know how things go, ok? I'll say a prayer for you! Best wishes to you, my friend. God bless.
Thanks - I sincerely appreciate your responses. Gastro didn't mention a bag, so guess he is thinking of a simple resection. Will be great if it can be done by laparoscopy as I have a 6" vertical scar from the original laparatomy and a 4" horizontal scar from a hysterectomy - will be able to play chequers on my abdomen soon! I have diarrhea each morning (3-4 times, and explosive, watery, etc.) which is probably why I have lost some 10 lbs this past month. I really don't want more diarrhea, but am aware that if the stricture gets too narrowed, it could burst and cause septicaemia.
My gastro said he is doing a trial of Humira with 8 patients, (we do seem to lag behind the US in meds) also some with thalidomide, but thinks I am better staying on methotrexate, as I tolerate it well, only problem being elevated MCV and MCH, low haemoglobin. I had some blood work done after I saw him, and besides, renal, liver, WBC, haemocrit,and c-reactive protein, he has ordered a thyroid test to determine whether this is causing my extreme fatigue. I can honestly sleep 12 or 14 hours a night, perhaps 2-3 times a week,and sometimes a 2 hour nap in the afternoon. Luckily, I am retired, and have a compassionate husband who has no problem with this.
Don't know how long it will take for the MRI test to be done, hopefully not the 6 months my husband waited this year for one on his spine! In the end, he went privately, at a cost of some $3,000 and this didn't identify why he can't walk more than 30 yds and his feet are numb and blue. He is to see a neurologist Nov 12th so we are hopeful for some answers then. I think a stricture may be considered more urgent for MRI than a walking problem so am hopeful my problem can be sorted out soon.
Hey Lizzie My first time on this site, I am a LPN also know as a Licensed Practial Nurse or Licensed Vocational Nurse. Anyways, I am 33 years old and was diagnosed with Crohn's when I was 17, it just always seems like something with Crohn's is going on!! I am going in for my 14 th surgery on November 6th and really kinda worried and scared I guess. I get chronic anal abscess, I miss at least 5 days of work every month for last year because of this,(get treated like **** by my comworkers and boss for being sick, over something I have no control over is very stressful. Comments that coworkers say to eachother when I am sick, being ignored and ) so my doctor has decided that he wants me to have a fistulectomy with the seton done to try and heal up these abscess hopefully. But he never told me how big this seton was? Painful? Noticeable? Cleanliness? How to emotional handle any of this? I am glad I finally found some with Crohn's disease to talk to, everybody is so different with it, that is certainly one of the reasons it is so hard to treat effectively. Well if ya just want to talk to someone or whatever feel free to send me an email at ***@**** and we can swap phone numers or something. It seems to help a lot when you can talk to someone who is going through similiar things. Would love to talk to you more!!! If there's anything I can do to help you I will certainly try. Just to vent sometimes helps people, let me know!! Good Luck :)
Hi fellow Crohnie! I am sorry to hear of your problems with fistulas. I have a small one in the rectum that goes through to the vagina, and faeces seep through there. However, it has never turned into an abscess thankfully and my gastro said surgery will only make it worse so we leave it alone.
I am afraid I don't know anything about a fistulectomy with a seton - sounds as if it is like the procedure sometimes done for internal haemorrhoids. I don't know if you have had Remicade in the past, but this has had good results with fistulising Crohn's. My symptoms have been kept in check for the last 6 years with methotrexate - used to be oral weekly 25 mg, but gastro changed me last year to injections of 12.5 mg weekly, which I do at home. This way we know exactly what my body is getting, as I have some inflammation in my small intestine and this could cause me not to absorb the mtx. However, the mtx has some really serious side effects such as lymphoma, kidney & kidney problems and mylosuppression of the bone marrow. My bone marrow is out of range (red cells too large), but this does not seem to concern my gastro at present, although it does me!
Your co-workers should be ashamed of themselves! Crohn's is a very serious disease, but a socially taboo subject, as cancer once was. You wouldn't wish this disease on your worst enemy, never mind friends. Just try and ignore their comments and take care of yourself. Luckily, I worked in my husband's electronic business for some 10 years before retiring to live in Spain when I was 39 so I have no problem in having days off, or indeed hospital treatment. I got breast cancer in 2003, and quite honestly, I feel Crohn's is much harder to deal with than bc, as so much research has and is being done for bc whereas very little new drugs are coming along for Crohn's.
Likewise, if I can help you with anything, please ask. Your email address didn't get through. You might try it with "and" instead of &.
How bad is your Crohns and when did you find out? You don't have to let it scare you. Most people who have it live perfectly normal lives and don't have to change much except maybe watch certain things they eat. If I were you, I'd stay away from looking things up on the Internet about it. It can scare you unnecessarily. Have you seen a doctor, preferably a Gastroenterologist?
I can understand your being afraid, but actually staying in contact with your doctor can make your less afraid. It's usually the unknown that scares us the most. And the thing is, if you are regularly seeing a GI doc then if they did find something, they could get to it right away. If you aren't seeing anyone and you let things go, it could be a lot worse by the time you would get seen. Does that make sense? Having Crohns isn't a death sentence. Most people wouldn't even know you have it.
Please reconsider seeing a doctor or GI and staying on top of this. I really do think it would make you feel better and more in control of this disease, rather than not knowing and fearing something that may never happen. I have been trying to educate myself on this disease because I want to know more and the things I can do to improve me life. Right now my GI wants to run some test that I really don't want to do like an upper GI with small bowel follow through. I dread drinking that drink again! But I'll do it because I know he wants to stay on top of all of this and watch things. Right now, I'm not too bad. I don't seem to have it as bad as some people. However, since my grandmother had colon cancer, I do want to stay on top of things and make sure everything looks good. Colon cancer is treatable if caught early. Some people ignore the symptoms to long, though, until the cancer runs through the body. I will do whatever I have to to make sure I stick around for as long as possible for my kids and hopefully grandkids someday!
If you ever need to talk, I'll gladly talk to you. Like Lizzie said, most people don't want to talk about this stuff because for some reason it's socially unacceptable to talk about. That's why those of us with this disease have to stick together! Nobody else wants to talk about this stuff! :)
I hope everything goes well for you. I wish you the best! God bless.
i bleed alot...well.. everytime i use the bathroom.. even if its just to urinate... blood still comes out of me... not from the regular places...well.. you know.. it comes from the anus. i cant afford to buy the foods i need to eat right now.. with a large family.. and being in school.. and the amount of stress i am under.. i feel horrible. i guess i am just in a slump about it.. i am sure everyone gets that way. I feel like the family that i do have dont care.. they are very insensitive about many things.. almsot to the point of well.. lets just say that they do things they shouldnt. when i was pregnant.. everything was great.. i had no symptoms at all.. no bleeding.. no pain... nothing..now... its been 6 months.. im in hell. sometimes.. in school. i will be int he bathroom for so long.. heaving... bleeding.... in pain... i cant afford the medicaition that i was taking before... its from a health food store.. adn it really was doing the trick.. the prescription meds i used ot be on ages ago did more harm that good for me.. it was a nightmare as well. i just dont know where to go from here anymore.. i feel so walled about it now.. im not sure what i should do... so i just dont do anythign anymore.. i saw a show on oprah the other day.. about taking care of yourself... all i could think was.. wow.. when do i do that? lol... i guess there are just alot of things hitting me right now..
there will be times when i dont even make it to the bathroom .. i will just end up crapping on myself.. as my kids watch.. as others around me watch... its humiliating.. i am so afraid it will happen at school.. i barely make it to the bathroom there.. and when i do .. im in there so long i find myself counting tiles. when i did go tot he gastro doc.. he was mean to me... then i foudn another.. who told me i was shiiiiitt out of luck because my allergies to the drugs. i went to a nutritionist.. that was well and good.. but the prices of health food is sky high.. and right now.. being in school.. with kids.. i cant afford it.
im just quiet about it now.. it doesnt seem to do me any good to ask anyone in my family for help.. i think they are so used to seeing me crapping myself.... scrunched in pain.... so much that its become a normal thing for them.
i just dont know what i can do right now... i just feel .. well.. stuck.
I'm so sorry about all of this. Of course you deserve better. I guess our families just don't understand sometimes and you've got kids, right? Kids, especially teenagers, tend to be in their own little worlds anyway and can tend to be rather self-centered, so I wouldn't take that personally! Men can also be rather insensitive and get caught up in the rat race at work. I'd talk to your husband again. Maybe he doesn't realize the seriousness of things, especially if you keep a lot insided. The GI docs reaction to you was a bit shocking. I think I'd find another one. Do you have good health insurance that will cover all that?
Don't give up. Look for a better GI doctor who can be understanding and compassionate. I know theyre out there! Ask around, see if you can get referrals. Please don't give up on yourself. You sound like you're in a slump right now and kind of depressed and who could blame you! I'm so sorry you're going through all of this.
The fact that you're bleeding concerns me. Please try and find another doctor. There could be something going on that they need to be aware of and could get help for. I know you've found a couple of jerks so far, but they can't all be like that!
Your family doesn't understand what you're going through because they've never experienced it. You deserve better treatment, from them, from the GI docs and from yourself. Don't give up on yourself! Keep looking until you find something that works.
You might want to talk to Lizziecee too. She seems pretty knowledgeable about Crohns having had it a long time. I hope things go better for you soon! Keep in touch and let us know how you're doing. I care. ((Hugs!))
I will likely have a small bowel resection to remove a six inch stricture of my ileum within a few weeks. I meet with my Dr. on Thursday. I am currently in a miserable flare than caused kidney failure and ulcers reaching into the roof of my mouth.
I understand there is no cure and many meds will be needed. I hope for relief from crohns. I was diagnosed 9/9/99 and have been medicine free for the past four to five years. It ended in a breathtaking flare.
hi i was diagnosed with crohns this january when i was 29weeks pregnant i had a lappratomy i was then put on steriods and pentasa tablets i had to have my baby 2months early and she was in special care for 4weeks i went back in july for a ct scan and they found i have a 40cm stricture my consultant is not doing anything much to help me and my husband is very upset as iam going thru my 6th flare up and iam very stressed just wanted someone to talk too thanks alexandra
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